Cat Visit: the full story (plus trip to the beach)

I have been quite ill the last few days, I am sorry that this post has been so delayed: I had probably the worst 23 hours in memory. I lost not only the best possibility of IVIG in a timely manner: not because the neurologist didn’t think I was terminal. And not because he didn’t know how to do IVIG but because he did not know anything about central autonomic failure and in 37 years had not treated it, and not with IVIG. There are NO autonomic failure specialists in this province. And even the top Neurologists of two countries telling him this is what needs to be done was not enough to stop him from saying, “It is not something I am going to put my name to.”

No treatment

No pain clinic or oversight of any medications.

No GP.

And then, after a grueling 6:30 am prep for a medical appointment and the joyful neuro visit in the afternoon, in the evening my body reacted to something, slower and longer than Cheryl’s did. And I evacuated until 5:30 am. When I finally slept, I woke 30-40 minutes later, said, “help” and Linda helped me BACK to the bathroom for round 2….well actually round 14 or so. I had been spontaneously bleeding from my nose from 4:30 a.m. on, then my body went into shock. I bled from the anus, as well. I got back to bed about 6:30 am.

The workers with an earthmover, a truck and several other heavy machinery started early, before city bylaws allow at 7:00 a.m. – 30 minutes after I got to bed – they finished at 5:30 pm.

But I have kitties. Or memories. At the shelter we got a bit confused and went into the ‘small animals’ room, which turned out to be mostly rabbits. Each rabbit had, if not another rabbit, a stuffie companion to be with. Indeed, it was nice but strange to see that the animals here were treated in a far more disability and friendly way than um, humans like me.

In the cat rooms, of which there were several: one large room which extended to a expanded play and sunning room and then an outside room. I did not want to go to the outside area as I would have had to flip up my casters and that would have scared the cats. Most of the free roaming cats like this one didn’t have a name I could find.
I quickly learned that cats really like being slowly scratched or rubbed underneath the jaw. This cat was purring in quite a contented way.I also talked in a soothing voice in case the cats needed to recognize me when I came again. Since I have little scent (I actually borrowed Linda’s gloves for this trip), I am hoping they will recognize the voice.
As you can see, visiting cats and having kitties accept me has absolutely no effect whatsoever on my happiness or well being.
There was one cat, that looked a year or just under, which didn’t want to be petted but wanted to hide under the wheelchair. So everywhere I went, the cat would follow. I guess with all the rooms they forgot one thing, something to hide under and spring out from. Anyway, if you adopt this cat, expect to find him in small spaces or under the sofa.

There was a bonded pairing of an eight month old black kitten named Betsie (ug! The name!) and Murray. Betsie was VERY outgoing, and Murray was pretty shy. Betsie liked to play, and then like to run back to Murray – a total momma’s boy…except Betsie wasn’t a boy and Murray wasn’t a mama. But more on that. Here Betsie is playing the ‘Spring from the back of the cage and chomp the finger’ game.You can see a pink bald patch of skin on Murray. When I first went to the cage Betsie didn’t know me and Betise went back and sucked the teat of Murray...except Murray is a guy. So instead Betsie has licked all the fur off of that section and licks it or suck it when she feels sad or needs comfort – the cat equivalent of sucking a thumb. Here is the older, more mature and shy Murray coming for a sniff.
There are sunning shelves all along the one wall in the next room as well as climbing and jumping platforms. As you can see with this platform, there are stairs for the older cats to walk up to the platform in order to sun themselves. A sort of cat disability adjustment. The shelter did a good job with pairing, with other ailments and with older cats to accommodate the needs and give them equal access.

Apparently, I found out later, that when cats like you or want to really know you they touch noses which is the cat equivalent of a ‘hello’ or handshake.
I have to admit that I spent a great deal of time with the kitten Betsie and the two year old Jasmine who ACTS like a kitten. First, using all FOUR legs, I am ‘officially caught’ – those pesky pink wiggle things will wiggle no more!

Then, while holding me still with the back legs, she comes in for the CHOMP!After a few chomps, Jasmine licks my finger to show it is all in play (that is my HOPE, instead of, ‘she licks my finger, hoping to lick up the blood from her beheaded prey’).
Of course, whether it is all in fun or not, that doesn’t mean she intends to give up my finger. She caught it and now it is HERS.
Jasmine also like to play the catch and chomp game upside down. Which amused her. Here she is resting and of course STILL holding the finger. I think I am supposed to rub her stomach and tell her how brilliant she is. But I am far too dense (hey there were bars in the way) so she had to make do with playing with me some more.

After the cat shelter Linda went to get some fish and chips so she dropped us off at the waterfront, atop the cliffs. It was sunny but with a good breeze to keep me cool. Cheryl and I rolled and ambled along the top of the cliff, looking out over the water to Port Angeles and also people watching.

I found, along the cliff path, this very long and very steep trail down to the beach, which meant I had to go back and forth and let the sides of the trail stop me and the wheelchair by ramming my feet and footrest into them. Fun.

It turned out it went down to a viewing platform, where we could see the driftwood of the beach and the curve of the bay. The sun was high in the sky.
The last bit down to the beach was set of stairs so even if I made it down.....no way back. So I asked someone passing by to take a picture of us. By then it was time for the hard part, to go back UP the path, inch by inch. Ouch! I stopped to take a drink every bit of shade and we met Linda and off home for some fish and chips, watching anime and then off for a nap. A not so bad afternoon.

Cats make Beth feel better

Here is a prelude to a post later today. Visited a cat shelter. Here is Elizabeth petting.......Elizabeth the cat.

Jasamine the cat is a mouser and like to play, even at two years old. We had a lot of fun, particularly because she liked to 'catch' my wiggling fingers.
And then BITE THE HEADS OFF! Yup you can see she is down to the second knuckle. Jasamine would be the kind to leave you lots of 'gifts' to wake up to, all the small animals in a 1 km area.
Still cats make Beth feel better. And make Linda happy too. And they shed.....a LOT! So it is LIKE owning a cat.

Vulnerability

I have been in burn out for a long time (months); I recognize the signs because I have tried to support others who are or were burnt out. I made up five official stages so people could recognize how far they felt they were. But the truth is there are seven, it is just no one at seven lives very long. I am at stage seven.

During burn-out if you are daily abused from various sources, like I am, if you are in pain constantly, unending pain in every part of your body then after months of six, you enter stage seven. At seven, unlike leaving a situation, if you cannot, if you have tried to be ‘good’ and gotten even more abuse and pain then there is only insanity, death or both. I took a call earlier from my VIHA official nurse. She wanted to know the results from the hospital visit. When I told her I was terminal, she laughed and made a joke.

That is the sole nurse in charge of all of my care, my care plans, including if I get palliative care.
Today my Grandmother was interned. It hurt inside more than I anticipated. First because I did not remember what day it was: Linda came home in a suit and I asked her what client she had and she said she had come from the service. She had gone into able bodied mode, with no time for someone whose memory might only be a day or two at best, left without telling me, ‘stay up or be left behind’.

I had decided not to go, earlier, due to the hatred of that clan of four children; one of which had refused to be family recently (my father). But I still would have liked to know and was waiting to hear if the memorial was wheelchair accessible. Linda told me at the service another of the four children approached her, with tears, told her that she read my blog and loved me…..but that she couldn’t do ‘family’ now, and thus couldn’t see me, call me, contact me, email me (ah, yes, this ‘love’ I know about). Read my blog but couldn’t email me, as none of my family (all living here) have, or contacted me for the years since I came out.

I did not go because then the focus would not be on my grandmother, but on me, as one uncle said he would walk out of anything I attended. But she was MY grandmother too. My memories and my relationship with her too. She was a hard Matriarch, and had to be to feed four children from the 40’s onward, in the 50’s when her husband left her. One of the earliest stories my father told, or rather tried to fool me with at an early age of four or five was how he mowed the lawn for the promise of a new drink, “Adam’s Aid” and in the end, he was given a glass of water. There wasn’t a follow up of a treat, just that she had gotten him to do chores for water. Linda said that was Nanna all over. She was abrupt, and showed her love in unusual ways, like pretending that she had baked cookies for herself and was just giving some to you. She also would greet you with a note of chores in the mail box and a locked door, with the knowledge that once the chores were done, the door would open. They were things she was too short or weak to do, and she was too proud to have to ask around for help. She was tough and so her family is cold and tough and only had a memorial service because she had paid for it in advance.

But I wasn’t there. I saw my grandmother and talked to her shortly before she died; she was still full of a yearning for travel. Every time I see a National Geographic or a board game about obscure information, that is where you will be; reading every little card set up in a museum (it would take hours to do two rooms!). You were hard, and scared me a little as a child, but I love you. Goodbye.
I have spent the lasts few nights at home talking about not being able to take the pain anymore. I cannot cope with the levels of physical pain. And in level seven of burn out, if you only EVER get abusive and painful responses regardless if you are assertive, compliant, or say nothing at all, then eventually you believe that every single thing you do will only cause you more pain. And that was where I was, day after day of abusive phone calls. Nights of moans and sleep between hours of being awake praying for pain pills to work. We wonder now if that is the half digested stuff along with food that comes out in my feces….the pain pills.
Today I found out that my walk-in clinic, my so called GP, had cancelled the waiting list spot I had for the pain clinic two weeks ago. I had been waiting, gritting my teeth through each day for nothing. The recommendation to the specialist had been cancelled and now, until I get a new GP, there is no way to get another recommendation. There is just the pain.

I was also told my entire medical records were there, boxed and I was supposed to pick them up by day’s end. That while it was now a walk-in clinic that did specialist referrals, tests, MRI referrals and other things for every other person: for me, the only treatment I was allowed was pill renewals. That is it. Official sub-human. And this was decided when I wasn’t even there – maybe when my ER results had gone there? Gosh, even more complicated….dump her.

So when Linda came home, her AB speed and very abusive. She spend another day taking pains to correct me, to read my personal email over my shoulder and correcting my mistakes. So much did her mother verbally abuse her that perhaps she can’t stand the feeling of NOT being right anymore, so she shows me, since then, every little time I am wrong (and thus makes me feel that hated feeling she is trying to escape). She had been sent pictures of my grandmothers funeral already by my parents. I had not. It was a slap on the face, so I gave myself one. She corrected me, told me I did it wrong, so I gave another. It turned into a flurry of verbal and physical abuse, her holding and restraining me while shouting that she would do my worst fear because she felt out of control and needed to control….she MUST control, things must be in CONTROL!!!

And for me, after she scratched me, without remorse; I knew that even to share as I did the night before the ways during the day I had been dreaming, fantasizing of dying to which she told me to be quiet and count so she could sleep, that she did not WANT to hear me. She did not see me as a partner, as an equal. So I wanted to show her how that felt. How I felt when even the partner I thought I had used the information of burn-out to abuse me. It isn’t easy to make both arms bleed freely when you don’t have much more than an 1/8 th of an inch of nails or less but if you are insane and in a frenzy and don’t mind losing a nail, you can do it. I can. I did.

Then I started screaming, because the emotional pain inside was so much.

I am better now. She is better.
I asked her if she wanted to be with me now. 'Yes,' she said, 'I want to go to Hawaii with you and ....'

I cut her off. “No, now. Do you want the me of now? Are you proud of the me of now?”

She was confused.

I took her hand. “Linda Joy, do you take me as your wife?”

Finally, for the first time, she cried. She got down on one knee. “Elizabeth Katherine, do you take me as YOUR wife.”

“I do,” I said, “In sickness and in health.”

“Yes!” she said and buried her head in my lap. I stroked her hair..
“For better or for worse.” I said and she nodded yes and I held her, and slowly stoked her. If we had the now, if we were a couple, not just a caregiver/carer then we could sort the rest out. Maybe heal the wounds we gouged in each other, and ourselves.
The pain in the body goes on, and it will go on, until I can get a doctor to help me, or buy drugs on the street corner. The doctor who would work to find a solution was at the walk-in clinic, so that seems no more options. Cheryl is coming tomorrow and says she has some Manga, which right now is all I have for pain control. That and art books from Akadot. I like to look at the pictures. I like the warm feeling Manga brings.

I have been in pain for so long I can’t remember what it is like without it. Linda is going on respite for a week. I think she is burnt out as a carer. Or needs to recover from HER mother’s mind fuck in the prairies. I want to know when I get a respite, when I will stop thinking of pouring boiling water over me just to see what happens, if anything. Or throwing myself out of the fourth floor window to see if I get treatment for that, or if they tell me to see a GP. Or if I die. Cut it, smash it, break it: limbs, fingers, my body...what difference will it make. I want to live, but I am so tired of the pain. One person today, from VIHA, as I made a complaint against the RN who laughed at my being terminal, she said, “It sounds like you need someone who actually cares about your care.”

Yeah. Plus the head of the US specialist clinic said I needed better pain control then, and soon. That was five months ago.

Loss: the 'real' Bucket List

How do I speak of what is secret and precious? I guess I just start.

Loss. It is the pain of having something removed, something thought and assumed was mine to keep forever. The pain of having the choice taken away; having that possibility taken away leaves an ache.

Loss comes with chronic and degenerative illness/disability. If you are born with one and often if you are not and get one for no 'why?' at all, then society shows and tells you over and over what you are missing, making your loss public instead of held in the privacy of your heart.
Someone might want to be a ‘Stay at home’ mom, but no one wants or thinks about being a ‘dependant and ill mom’ or a ‘stay at home person’ who watches the life they planned for themselves being done by others. They don’t think they will have to lie there and hear of cousins or nieces and nephews, who now do what they had planned for themselves, if only able.

Within disability and illness we talk about spoons or coping but we don’t often talk about the loss that we feel, see, brush up against daily and weekly. We don’t have an easy theory for the pain of loss which hits us in the face every time we leave our stable environment; or haunts our dreams. There are the things, little things, we fight to hold onto: the ability to talk with friends, to drop down to a restaurant when we want, to go to a movie, to have a date, to go shopping, to go spontaneously for a drive, or to go spontaneously anywhere. As time passes, we give up some of these fights as we put our energy into survival. For me, every loss makes me feel withered and small, that it is not the choice I have lost but part of me.
I get bitter when I hear people talk about doing the crosswords ‘while they are waiting.’ Bitter because each day I work at my highest levels just to email people. And each day I am ill and cannot email, I fall behind. I will never have the capacity mentally to do a crossword, nor a life where I have so much time that I am ‘waiting’. And that is the loss I feel over just a crossword puzzle.

So how then do I as a woman dedicated to sports sit on the sideline? How do I accept that I spent 14 years in order to NOT teach people about Victorian Literature or History, or English Literature or Creative Writing. And instead I try and grasp the cloud-like wisps of living with disease and dying and write them down. To fill the critical ‘between the lines’ of every heroic crip story, and every disabled person or dying person who pogo stick hopped across their town or wheeled across a distance to raise money for research. I write the rest of the story. I write about the nights we spend lying there, just thinking, and the mornings and the trembles in the hands and new symptoms showing up and not knowing if they are going to stay.

Loss is painful and it seems in many ways, every time I think I can take it, the pain of loss hits again. Does it ever end? As soon as I come to peace with myself, and accept this is who I am, I lose something else. Or am reminded of something that I had not thought of. Or worse, I forget that any loss I have does not affect only me, or redefine me but force others to redefine themselves and our relationship.

How to describe the feeling I have when I wheel out and Linda and Cheryl are talking in low voices? They see me and Linda stands, looking down on me and says, “Why don’t you go and play on your computer in the study, Cheryl and I are talking about ‘Adult’ things.”

It is the pain, so gasping and sharp it is on the edge of ‘exquisite’, like the feeling when salt is applied to a wound, that first overwhelming microsecond.
Somewhere in all the loss, in all the little memories of pain, and in the dreams and body memories that make me cry when I wake to find myself in a hospital bed, there are still moments of sweetness. More than just a willingness to trust a partner or someone and be taken to places where people may not know my condition, may make things worse and so those with chronic and degenerative conditions have a horrid time. That happens and yet, I and I think ‘we’ risk again.

The questions must be asked. What is important now, not the ‘before’ life but now? What can I be, what can I do? What life can be constructed? These questions are answered. For those with less time, they are asked and answered every adjustment, every major change. How do I want to face my death? How do I want to be remembered? Who am I after all?

There was a movie called ‘The Bucket List’ with Morgan Freeman having cancer and no treatments work and yet he has all his hair and looks great and is sharing a room with a billionaire played by Jack Nicholson. And the basis is that what have we denied ourselves over the years we should get back in dying. So with unlimited money it is not about growth but about how to be selfish and shallow: that dying doesn't include caring, family, or self examination, it was about driving fast cars and jumping out of planes in exotic countries. The movie not only got immediate popularity but for the “Me” generation, the generation now, people started making their own “Bucket List” of what they wanted to do before they die.

Someone said to me recently that in North American, with so many needs met for those who have the money, there is no spirituality. Maybe so, as the generation which has the money and power seem to want even death to become about pure consumption.

For those of us with Chronic Illnesses, degenerative illnesses, chronic conditions, terminal conditions, I have found, for me, and others that there is another list, a genuine ‘Bucket List’ which has nothing to do with the fantasies of an able bodied life. Those dreams are burnt away. I dreamt of seeing my name up there in the top 10 nationally in fencing Epee. Now that seems so...well, not where I am. And while I would pay a lot to be able to fence on a strip, a piste again, with full motion and power, to stand with the strength literally radiating out of me as I move my body, limbs and torso, fingers and mind all in unison of microseconds. Just one bout. And yet that is not where I am either. That is not on a list because that is part of what accepting loss is.

There is a list, almost invisible, written in the heart, because it is not a list that others or I control. Indeed, the aspect of having a chronic condition is learning that however type A I might be, I am not in control. And so, in hours and minutes and days of dying, in the talking with those who do matter, my family and friends, we talk, we rest, they help me to bed, they watch over me. The knowledge that I will not be here again, I will not come this way again, I will not see this summer again perhaps, probably, informs us all.

We talk of places, San Francisco, and of things like food, or experiences. I remember seeing fireflies and it turns out that no one has seen one for a long time. I saw some when I was 21 when I lived in Gettysburg, PA. I ask if they are dying out. The others think maybe so. And I think, and say that it sure would be nice to see some again. Because there is something magical about fireflies isn’t there? Ray Bradbury knew that....they are the eternal summer, the magic of a warm, quiet, still night. And then the conversation goes on and we talk about a road trip maybe, fantasy probably, because fireflies cannot be produced by wishing, nor controlled. I will not use my last strength and funds to chase fireflies. There are so many other things I would like to share seeing with Linda and Cheryl (like Sakura-con! And trying Jyudo, the Japanese Archery. And doing some 5K’s).

So fireflies and meeting Cheryl’s family go on the real ‘Bucket List’ because that is the list that maybe will happen and probably won’t before I kick the bucket. And I can’t buy them, I can’t own them, I can’t will them, they either happen or they don’t. And I think that is the same for many of you.

Whether for you it is the smell of fresh bread you have baked or if it is a day, a ‘good’ day, without that many rests, on the park, not to hot, watching the kites, flying a kite, coming back a little browned and exhausted. If that is on the Bucket List, then that is what you remember as you lie in bed, when the pain meds don’t work very well. Or you are so tired, so very tired that maybe it is time to really sleep this time. And you think of that day, because you had that day, together with the person you loved. It isn’t fast cars or expensive meals. But it is what gets you through the darkness.

Tomorrow or the day after I will write about the three things I have to remember from my Bucket List and the ones that I hope for, I think about, like holding a kitten. I haven’t done it but I think about it, day-dream of it. I hope that the people who read will share a little about loss, or about that experience they remember which gets them through the night.

Last week, the second night in Manitoba, we went out towards the van, Linda, her father and I. There had been flooding of the marshes and standing water and in the darkness between house and car I looked to the left, and slowed as I looked again and said, “Linda.. fireflies.” And she came and looked, and I wheeled into the black to see a patch, a ditch and a bit of wood lighting up with green dots against the dark. And Linda stood beside me.

I don’t know how long, a minute, more or less we stayed and watched. Because now, after all these years, had come the fireflies. That I will remember, always, because it was on my list of things I wanted to see. The list of things I knew I never would see. And yet there they were. Even if the rest of the trip wasn’t what I wanted, what can erase a moon, and fireflies, where none had seen them, where none of us there had seen any for ten to fifteen years?

I may seem very simple to you. Fireflies. But to have been there with Linda, to share them together is worth more than anything I can think of that I would do alone. That is one of my things I did before I kicked the bucket, I saw fireflies again. Unexpected, and yet, as precious to me as a taxi drive with Linda through a Japan town after midnight, the quiet streets and the warm glow after floating around on natural hot springs for an hour. After seeing through the mini tropical garden and green hazed smoke which came out of the vents from the spring itself. The memory of those nights, that feeling of contentment I will bring back to rub until all the sides are smooth from knowing it again and again.

Loss will continue, the pain will continue, death will come forward, my life becomes limited. Yet mixed in there will be that single minute, on a field, with Linda, her father behind, and the illumination.

I am not AB: how easy to forget. And some 'family values'

I was stupid. Assuming people would get disability time, assuming that I was going to the same sort of protection and care as I had at home. The caregiver book notes that to those not with a chronic condition, the obsession of the self, my need for sound, for sleep, and other medical issues are seen as self absorbtion. To the person with the condition, it is the basics of survival. I forgot that.

The fastest road to getting FUBAR (effed up beyond all recognition) with a chonic condition/disease while on a visit/trip is to forget the obvioust: I have a Chronic degenerative and terminal condition and disease (In fact I have many). And THAT is why I haven’t been blogging.

Because instead of being me: the person who has the regulated medicine, the regulated drink, sleep every 8 hours, more regulated medical drinks – instead I became what everyone here wanted me to be (and what I did too): An able bodied person sitting down. I can have it all (yet the chains around my ankle say that the diseases won’t let me go that easy).

Even Linda was sucked into the fantasy for a day, then two days as I am not too bad, and yet, even the seizures after talking too long, don’t give us the medical the heads up. The reminder that I need consistency and stability, I need others to work around my health schedule; not because I am a control freak or even like it, but because it limits the risk to my health. I did not follow this rule, I did not even remember until three days in and it was too late, now sleeping three times a day, grand mals every day, a missed nap for an ENTIRE day and having only eaten once (one way the matriarch controls is with food. We did not stay with them so we don’t get food. Linda shows up at lunch, I don’t as I am on the toilet. So I get no food. I was sort of asleep/sort of comatose at dinner for my third ‘nap’ where it is has been four hours and I can’t wake up – I get no food, no one to check on me the whole day. The Matriarch is a care worker). In fact the entire trip I will only have two meals a day for two days, the rest of the time I eat once on two other days and not at all the rest – if I show I up late, (and people on disability time who are not accommodated turn up late) don’t get to eat.

I got off the plane swearing I would be in better shape with better reserves when the week was up and it was time to go back on. Linda said we would take every other day off, that health came first. Today we realized she hadn’t once checked to see if I had drunk enough liquids (I don't get thirsty), not the whole week.

Did I want to see the nieces and nephews? Yes. Even though one couple would not recognize the Canadian legal marriage licence and that I was to referred to only as “Beth” and “Linda’s Friend.” I saw the kids, I played with the kids, and every time we were getting on, it was Linda's mother, who was complicit in the discrimination, would break it up and suggest something else to the kids, taking them away.

In this family there is only the recognition of the worth of men. A male cousin who cleans the street will always be more important than Linda, her daughter, a woman who regulates the service within government ministries in her portfolio. This daughter, who now has her previous boss’ clients as just PART of her portfolio job is, I am told, to be a blank slate, to merely do as a good woman does, and smooth things over in the family, to give joy to all, to do nothing but cook, clean, and be a good person if she can’t be a mother. That she has lived on two continents and travelled three extensively is an embarrassment. And the fact that I am there; well it is DIFFICULTY isn’t it, like the cousin who won’t marry (in a church), and has a partner (hetero). Who is introduced single and left to himself to introduce his partner of long-standing common-law marriage.

I couldn’t keep up and so I was thrown out the back. Forget the way they acted or statements towards gays. If on day one there are seizures after pushing a person who says they need a nap at 7:00, and one day two there is a grand mal and other seizures for a pushing me (and I let them, to my own shame) past when I needed to take care of my own health.
Eiki Eiki, who we took along, yes, the plushie got me to remember by asking me "Who are you?" Remember. To remember that every weekend I announce when we are going to do the tasks for getting the postcards done: matching, stickering, stamping, writing – none of these happen in those time frames. But here, I was to keep not to disability time but able body time and I was still pushing myself? Until I collapsed (which of course means no Linda and no food – she was sucked in just as I was). And yet, dragged myself to see more relatives, who kept me out in the sunset, until I was covered with bug bites, hours past my nap time, have six grand mals; including slamming my head against the rocks in the driveway. The child were always protected from seeing me. Of all the relatives, over the days only three stayed, only one actively helped, and she was a person who knew about being down physically. I could not speak and yet I was loaded into the van and informed to arrive the next day once I awoke for a ‘family reunion’ where all the relatives could come and gawk, the matriarch ruling the show.

Perhaps I am mistaken, I would think when I was a teacher, having a student unable to speak or move half their body after ONE grand mal would not make me remind them to make sure and get their home in. After six? Because calls from the matriarch every 20 minutes on how late we were to Linda rattled her into forgetting the medical bag and NOT GOING BACK and thus there was no way to stop the two cycles I went into. I was then back on the toilet, reading the last of the manga to keep the pain away before performing a digital exam (yes, sticking my finger up my ass). If you want to know why it takes four hours for me to have a NORMAL dump and why the first day it took 5 hours and a nap to get the first piece of feces out it is because my body does not produce lubricant anymore. Well, except the blood when the roughage undigested rakes the walls. That hurts. Well, after the exam, at 3:00 am I got emergency medical advice and it seems that the walls of the lower intestine (connected directly to the central autonomic system) and weakening, and that one had, when pushing covered the anus so nothing gets out. The “good” news is that it is NOT fused, yet.

What does that mean, it means I have to try to get back to Victoria after so much work to have a normal…every two day dump, I will be returning without the knowledge if the strength of this wall will return it IN TIME. While other (read very unpleasant) alternatives are tried for a while.

So with a bit of a fever and my panties stuffed with klennex for the anal blood, I went to sleep, to wake and call Linda: already at the ‘family Sunday dinner.’ She came back to help me shower and dress called every 20 minutes by the matriarch to get loud sighs and ‘you aren’t ready YET?!”

I did come. I guess like others, who walked into known death chambers and shooting galleries I didn’t stop and say, “Enough. I want to live.” Amazing how strong social pressure can be. Linda’s father had built three ramps, a clear statement that I was to have equal access to the house. The matriarch had the ramps put aside for ‘the convenience of others.’ We gave our gifts which were a hit. There was of course no card or gift from us though several of the people there HAD received a postcard from the project. And our 16 years of marriage together in August, six legally in Canada? Yeah. Right. Next. Like Queen Victoria, there were no lesbians in this house, just 'good friends'. And when I am dead, I will fade, as though we all met, none of the parents, the parents of my nieces and nephews took pictures.

On arriving we said when we were leaving. At that time, I say I am leaving. The matriarch has the ramp dismantled. Others may need to leave (there are other doors out).

While waiting for the ramp to be created again, I start to go into seizure, already on oxygen, I do, I have a seizure, then another, then I go to the ground, Linda says that ONE person from the 20+ there helps, holds my head as Linda puts the anti-seizure meds under my tongue. I grand mal/full brain seizure, then another, I am semi-awake, able to hear, and I listen as Linda’s mother, the matriarch, doesn't know how Linda can stand doing it; that while the mother is in caregiving she would never help out her people like Linda does with me, hands on and all (she also illegally sleeps during shifts, but says it is okay as others do it). And then a few comments about how she doesn't know how Linda can stand it (with implications that I should be left in a ditch somewhere). My ears tell me she is holding court somewhere right, probably in the kitchen with the mothers and others, a crowd of 10 or so.

Linda, the person holding my head and I fight on in the now emptied living room. I stop breathing, Linda keeps bringing me back but I can’t stay conscious more than two or three seconds. She has to use the emergency ambi-bag to keep me breathing. I have another full seizure.

This time when I wake, I can see nothing but I can hear the matriarch telling everyone that what is happening to me is because of my THYROID and how a book she read tells how the thyroid is connected to everything. She is too ashamed of her own daughter to tell anyone that I am married to her, and she was, we found part way through, too …..I don’t know, ashamed, to tell anyone how ill I was. I’m not sick, I’m stubborn. I’m not dying, I’m holding people up from dessert. So now, except for the one family member who had a TIA with lasting memory and absence seizures who KNOWS what it is like and the person holding my head, I have been reduced to a thyroid problem and an inconvenience.

“Aunt Beth,” one of my nieces asks, “why do you sometimes stutter when you are trying say something?”

“Well,” I say, “It is like trying to find a word in a book, sometimes I can’t find the right page right away so I just stutter until I find it.”

“Oh.”

The parents go, “We are going to have to explain that later.”

I don’t know how many grand mals I had, or how often I stopped breathing but it was an hour later when I could breath on my own, one eye open. The matriarch is already deciding who will visit me that night and who will we see the next day. The words, “Get to the airport” have not yet been spoken. I am worried, but luckily, I can’t see much. We go down the ramp, I gripping the wheels and Linda the chair, the rest watch.

Someone still comes to the motel room, one last visit, or second to last, not it will be the last as at 10 pm I finally get my nap. I don’t get to sleep as long as my body needs it but waken to an alarm, waken to pack and then to sleep for 5.5 hours so I can wake tomorrow for a 10 hour day on a two stopper hopper airline flight.

I forgot who I was, and it was fun for a day, to be the Able Bodied Aunt. But then to be forced into the role again and again? After HOW MANY days of grand mals does it take before they get that maybe the naps aren’t me being selfish and lazy? That the oxygen and medicine are for something more than a thyroid condition? We can’t sleep or nap as there are two more calls, from the matriarch, more attempts of control over that last 11 hours here.

I can’t show our pictures here, not that I would but I can’t because it was implied if not stated that the people who read me and my lesbian friends are pedophiles and I was not to show pictures of children to these predators. Yes, thanks.

So that is how I am out of manga, and I am out of here. I wish I had the energy to kiss Linda all the way down main street but just breathing has taken priority. I only hope that by the time I make it to the airport and on the plane, I have enough of ‘it’ whatever that is to make it Victoria.

There was joy, and magic, but those memories fell like petals to the oppressive demands first from within and then without to always be able bodied. Something I can’t be. And something I suffered, and Linda suffered because I couldn’t be what I’m not.

Mongo Sick, sick

I am sick and have been for four days. I have now read ALL the manga I have with (which was most of all of my unread manga). I sleep a lot now, and don't leave the room, I am in a lot of pain. Not the best trip for me, to be honest. I don't know how I am getting back by plane. I really don't. Cheers.

Death with dignity my ASS! Try inch by inch (that might be the pain and frustration talking).

We have landed, on to see the In-Laws!

I have arrived at the flat bits of Canada (which go for about 1,000 miles!) and had my first night of little sleep!

The good news is that I am here and alive. When the much older woman who was preboarded behind me with her canes said as we FINALLY arrived, “You’ve had a rough trip dear!” that is not the most encouraging news. But true.

It turns out that I found out I cannot go on any roller coasters from now on.

The connection is that the acceleration down of an airplane along with the drop in pressure creates enough force (maybe 1.4 G?) that I can’t get my lungs to open, which makes me stop breathing and pass out. So I didn’t get to watch the show, but it was impressive. The other down side is we stopped to pick up more passengers so two takeoffs and landings (4 passing out). Also a full plane, and I was stuck next to the ‘Pink Woman’ who had everything pink from her fingernails to her laptop, laptop bag, purse, carry bag, luggage, clothes, hoodie, shoes, and the gum she chewed non-stop with her mouth open. She did that plane thing where the person pretends there isn’t a person slightly purple who is 6 foot 3 inches tall crammed into the seat next to them. She also spread out her stuff. Well, I fought back by lowering the armrest. I understand having to sit squished by a beefy six foot guy but not a small 5 foot 2 inch woman who was thin, but had more pink bags than I believed existed outside a Hello Kitty Store (the ‘cute’ Hello Kitty, not the ‘naughty’ or ‘subversive’ Hello Kitty I get).

We arrived…..only to have the wheel of my wheelchair fall off. That was pretty impressive for so expensive a chair but apparently someone had taken off my brakes as the chair was in the hold – not a great idea. So that took time.

We checked into a motel which we hoped would be quiet and cool. Well, it IS cool! But quiet? They started with sledgehammers outside our windows at 7:30 am. It was a bit of a nightmare. We could hear what the front desk said, we could hear the neighbours (or was it the NEXT room over) having sex. Plus, most if not all people in the prairies, or at least those at this hotel talk as if they are talking across a quarter mile, that or they all have severe hearing problems. I have noticed this with Linda and Cheryl at home as a rural/farm/ranch thing as I will plead with them as they are booming out stories, “INDOOR VOICE! INDOOR VOICE!”

Plus, there is the whole directions taking 25 minutes because there are so many side stories. “You go past the lights, you will see Phil’s automart – now Phil, he is doing a lot better now that his wife has her drinking under control so that is actually open most days now and they repainted it red, no wait I think it was green, no it was definitely red. Then on to the next lights where there is a tire depot, I think they are going to develop that…”

Spouse interrupts with “No they tore that down.”

“Did they, when did they do that?”

“Three years ago.”

“They put up anything yet?”

“No the council wanted a playground and the other part of the council wanted a park.”

“So they did nothing.”

“You should ask your brother in law, he is on the counsel!”

“Well, it isn’t his fault that there isn’t a tire depot for Linda and Beth to drive by.”

“Isn’t it!?” (This is all done at full volume)

But I am off to see the OTHER motel and see if that is quieter on the basis that if I wanted construction noises at 7:00 ish I could get that at home and wouldn’t have to pay for them. Then onto……the IN-LAWS! (plus nieces and nephews)

Cheers and happy Canada Day!

farmers market, pain, weekend, pain, seizures, more pain, falling down, screaming.

On Thursday evening I went to a BIG farmers market of over 100 stalls. And in retrospect, that probably wasn’t the best idea. I say that because I was going to be doing a lot of talking on Friday and had a hair appointment on Saturday plus work and postcards all the way till Sunday, a medical appointment early on Monday and a Tuesday flight to see Linda’s relatives.

But I did go to the market and there was some really nice stuff there. Here I am at the beginning, in front of a woman’s stall who sells regular hand-made soap AND goats-milk soap AND Emu milk soap – that’s right, Emu soap, in many different scents and flavors. So if you need some, let me know and I will pick it up.

I did go a searching among the many jam and jelly people for diabetic jams. And I found a woman who was going to go into in, and while we were talking a guy came up and said, “Did you say Diabetic Jams?” and we talked and I told him where to get his at the James Bay Market on Saturday. So there is a buzz. I found a nice places that has these SMALL jars of diabetic jam but then were very aggressive going, “No, you can’t take a picture of it, it is under copyright!”

I said, “I am taking a picture so a friend can tell me what jams he might want from you.”

“No it is trademarked and everything!” They said and were very firm about that their jam jars not being photographed. I am seriously confused as M&M’s are trademarked but you are allowed to take pictures of them. I mean, it is an OUTDOOR market place of tables, I am standing in a public space and I can’t take a picture? Linda and I have found this before, with artists or potters who go, “No, you can’t take a picture, that is my original art.” And found that there are the 90% of the people who love the CRAFT they are doing, and when I put pictures up, like the woman with the soap, then people end up with soap, bought from her, or go there to get soap from her. Or like with Jason Hunt, I commission a piece from him and others can, as he has the cedar and will send me pictures as he carves it, see the process and contact him if THEY want a commission too. Then there are the 10% which are about the BUSINESS and are sure that they will somehow LOSE something if a single person ever sees their work without PAYING. Which is the fast road to obscurity. A little further on I FOUND the assistant to the Jam maker and here is what they currently have in Diabetic Jam (which they were happy for me to take a picture of). The jars are $5 each. They are also wanting to do more flavors and if someone wants to give a list of the flavors they would like, then they will try to do as many of those as possible.

It was actually sort of weird because Victoria IS a small town and I do review these markets that some of the people and stall owners were talking as I went by, “That’s her, yeah, in the wheelchair, she’s the one that does the markets.” Or a person going, “Yeah, I’m sure that’s her, there was a picture of her next to the soap.” It makes me feel rather weird like I am a reviewer or something. I just like finding interesting things, like this older gentleman who was selling broaches, Victorian and Edwardian broaches much like this beautiful piece shown here. I can’t do a full piece on the market yet as I am too wiped out.

But I did want to show this place that was packed called Mitchell’s Soups which sold salads, soups and desserts, all for $5 Canadian (about three pounds) which you just put in and soak (for soup, about 12 kinds) and with the salads, add lettuce or a single staple. I mention it because like many other places I asked about diabetic and gluten free and this place has three gluten free products, two salads and one dessert. We got the mexican soup (very mild we are told.....hoping!)

Then Friday I had some problems (GI) and crashed, crashed really, really bad, and then had some seizures, and some more seizures and some more. When coming home on Thursday I told Linda, “I have hit bottom, that is IT!” But Linda didn’t really get what that meant, like maybe I would need to rest before the hair appointment. No, that meant that I did not know if I could make the plane on Tuesday. But after not getting to bed, and hallucinating with a fever and having stopped breathing and waking to find myself suffocating (because I was too weak to expand my lungs), and had to be hauled bodily upright, and passed out about six times. Then she got it. And so did I. And I got to bed past 7 a.m. and thought I was in a cave.

I just wasn’t able to take care of myself, I had to be watched at all times or I was in risk of crashing which meant dying. So I was on 24 hour watch with Linda and Cheryl. And we needed that close watch at times: for seizures, for falls, for stopped breathing. One time, I remember clearly, my right leg from the knee down contracted so hard that the muscles ripped, a seizure, but while I was asleep. I woke with a scream because of pain that was high, high, high even after that pain article. And indeed it was enough to alert Linda and get her to the source and then I passed out (due to the pain.) When I came to, screaming again, Linda had managed to calm many of the muscles and tendons. However, that leg has caused problems and now transfers are dubious. And to answer a question, yes I am using INDY.

What we wanted was a nice quiet weekend, some hanging out time, some doing some postcards or reading, whatever time. That was what we wanted, just resting up. Taking it easy before having to do things on a summer day. The problem was I just kept stopping breathing, or falling over. Or the muscles from the seizures six, or eight hours ago would super-heat in healing and I had no way to get rid of it, and I would pass out. And then there would be another seizure.

Of course, I was determined to try and keep things on a type of schedule, to try and keep things normal, even if from my bed or INDY and so Cheryl (blue hair) and Linda (green hair – actually after the hair salon she has RED hair now!), came to me and we talked and stuff and then I would pass out. Am I scared? Well, I am going someplace where it is hotter than here, where I don’t know if there is adequate air conditioning, where everyone knows Linda, where no one knows the limits of my condition. Yes, I am terrified.
But we had the postcards sorted from last week and we did them. I had a seizure which ripped some muscles and did a partial dislocation of my left shoulder (my writing one – so things took longer – five hours instead of two to write the postcards – but they got done). We took the time to do the stickering again, and I enjoyed that. There were some new stickers. And then the stamping. But also we had some new cards from a limited edition set. They were very cool, they were oversized and perfect for stamping in texture and size. And we enjoyed seeing them. I will miss them. This one here is my favorite and it is going to a special person. Someone who did something without ever believing they would receive in turn, and acted simply because they noticed a need. It was a sacred act of kindness so it gets my best gothy, steam punk, old world postcard.
I guess what I want is a real vacation for Linda and I. A time to get to know each other all over again. Because with the hours away and the sleeping I have to do when she returns, I don’t know if Linda knows me as well as she did or can recognize the signs of how and who I am. I would like a time to be loved by Linda and to love back. And then I would like for her family to be part of that.

However, that is NOT how family visits go, usually one, two or four people decide what everyone is going to do and when and the person visiting is sort of like the prize goat which is shown off to people here, there and everywhere.

This weekend, in fact this last 3 hours I have fallen down twice, hurt myself badly once, started to suffocate once, unable to sit upright three times, and having purple hands for two hours. But we are packing, we are getting ready to go. I also think I had a seizure; the seizures are a stupid cycle because I cannot stop. I cannot NOT go to the doctor’s appointment tomorrow, I also cannot NOT take the plane trip, so I cannot simply lie in bed for two days to get the strength to do things. So instead, when I do things, and after a little bit, when I am used to things going well, I feel funny, I see blue sparkles, or I fall over or I can’t use half of my body and then I smell burning rubber and after that I wake up and my back REALLY hurts and Cheryl tells me that I practiced “Human Origami” and that I wasn’t doing the folding right because I can’t actually tuck my head backwards into the middle of my spine.

I may not post for a few days. I recommend reading the pain post before this one because dying and pain have been on my mind, or rather thrust onto me (and into me), of late. And the comments because Rachel is right, why do I need to say I WANT to live? Do any of my readers have to start every comment that way? Yes, I want to live, maybe not with this much pain, but I want to live. And if we as a society can talk about childbirth and all the things that can happen and the little things like cravings which occur; we can make public stand-up comedy routines about sex or relationships so why can’t we talk the same way about chronic pain, about degenerative pain, about not being able to remember a pain free day? And talk about how we cope, what we notice, what makes the pain that little bit extra that reduces us to tears (the future for me, the realization that this really IS ME, and that nothing is ever going to go away – that is what brings the tears, that with fatigue).
I have to go, but I wanted to show you this weekend and there were good parts too – 33 postcards and 4 packages. We are sending to five continents this week, and I think at least 2 postcards to each of those continents except for one. I watched some anime with Cheryl, we talked a little manga. The rest I don’t know, wiped clean by a seizure, only to see bits and pieces, like a surreal film. I hope it was a good weekend, I will post as soon as I am able.

I take Synthyoid. Pain and life management: talking openly

In just one day, things change.

I took Synthyoid this morning: the synthetic thyroid medication which we hope will decrease my fatigue and increase my quality of life.

Yesterday afternoon I had a long talk with a doctor about pain management and the auto-immune disease that is attacking my thyroid. They don’t know what it is but when my TPO (the anti-bodies my thyroid makes to defend itself) came back and they were only 25 times normal instead of 30-35 times I thought maybe…maybe they were winning. “No, oh no.” She said, “That thyroid is dead, the TSH will be going high, so let’s try synthyoid.”

It was 712 days from diagnosis including the day of diagnosis that I tried to get the medication to improve my health.

712 days.The GP didn’t want to give Synthyoid at first because it has been linked to osteoporosis. I had to explain that Evergreen hospital report said that I don’t need to worry about those kind of diseases. The getting old kind.

Linda brought out the Tramacet, which is our ‘breakthrough’ medication. A breakthrough pain medication is something you only take when the pain is so great that you cannot function without it. Since I am unemployed, ‘function’ means an inability to move. I take 3-4 a day. We were going away for 4 days, and ONLY had 40, and we didn’t know if that would be enough. Six months ago, 10 would last me for a month.

We talked about the need for a NEW ‘Breakthrough’ Pain medication, because this isn’t it. I am, every minute of the day in nerve and muscular pain to the point that it affects my thinking, my speech, my movement, tremors in my arms, my hands and induces seizures. That is ON the ‘breakthrough’ pain medication. The medication works, it is just my pain levels have doubled since April and we don’t know why; and without a GP or specialist to care, no one knows why. At the last GP, they had called the pain specialist we had, one who was more an expert in Fibro and he said that he didn’t know anything else to do. Nothing else to do: I was on three different pain medications, two of them synthetic opiates; I am taking 120-125% of the MAXIMUM recommended dose DAILY, sometimes more. I AM damaging my living. Plus I am taking a nerve blocker.

When I am in pain, extreme pain, as might hit me as much as 15 to 20 times a day, I will fall from whatever height without feeling it. I will fall out of a chair onto my face without my hand, in a rigor clench, moving from where they are pain-locked at my side. It is hard to breath, the pain makes it hard to breath, as sometimes the lungs, or the muscles of the lungs themselves are in pain; I make noises, like an animal in pain. If my lungs are locked then I mewl, or a groan, or a moan. At first, when I feel it coming down on me like an avalanche, a great thunder inside coming down the mountain and as it covers me I scream, and SCREAM, and SCREAM until I am buried underneath it, and then I can’t breath or scream at all.

I cannot see, I cannot move, I am not rational, I can with extreme effort catch a word or a phrase or a bit of conversation and hold it. If I am on the bed, I might see for a moment the Hello Kitty hanging scroll and think that if I can get the sheet around my neck I could hang myself. That if I could attach it to the bed somehow and use the electrical control I could strangle myself. Then the pain would end. But I try to move my arm, maybe I start to put some weight on it and the pain blacks me out, a thin membrane of consciousness with the fists and baseball bats of pain beating on me.

That is when a caregiver has to put a pill in my mouth, try to make sure I do not take it into my lungs and get some liquid into me/on me and get the pill down. Then the pain reduces so that I am a burning fire. Half insane, able to speak somewhat but also just as likely to grab a pair of scissors or a pen and try to jam in through my arm, to see if THAT pain, the pain I CAN control can distract me.
Linda can’t watch me during some of the times, I mewl. She leaves. She simply can’t watch. I asked her if she had a palliative plan (as I have authorized her to take action when I am in pain beyond bearing) and she said no. I don’t blame Linda, though to lie there, second after second waiting for ten minutes, for twenty, for thirty, for more, for anyone to come, as I have done more than once, it leaves a etching, a mark, scars. But then, we all, even me, the whole blog, the readers, have been shying away, not knowing what to say, averting the eyes to give me some dignity, slipping away for this post. DON’T LEAVE. THIS is my life. And this is the life of many, many people, and if we can talk about pregnancy, or having kids, or other things without always having to having the BIG ANSWER, then we can talk about this, right? About pain without a limited end....or dying.

Because that is the problem, as the doctor explained, narcotics CAN be given but each person adapts to the level of the narcotic differently so a 5 mg pill this month may require a 10 mg pill in five months for the same effect. And with my pain doubling as it is, that would be maybe a 20 mg pill in four or five months, then a 40 mg pill in eight….do you start to understand. No one can go on these levels of pills without being physically addicted to them. And with my disease, no one knows if I am going to die this week due to heart failure (remember my heart just STOPPING or all chambers beating at once is the most common cause for death of people my age group, followed by just stopping breathing, like I did today a few times, enough to turn my fingers purple – “like a snow cone” I said when I could talk).

There is a drug with a patch called Fentynal which isn’t AS addictive but can be 80 times MORE powerful than morphine. The doctor thinks this would be a good fit for me…..but GP’s can’t prescribe it in Canada, or at least BC. So I am referred to a pain clinic at the hospital, though she warns me, it will take “several months.” In two months I will take more pain pills than I took the first 18 months….and I will be in more pain than I was when boxing. It is hard to write that, it is hard to think about that, looming over me. It is hard to have it alone in my head.

I should share with you some of the realities, which maybe I have already, that while I can remember how to speak like an adult, I am not an adult most of the time anymore. I am 10 or 12, sometimes five. And I am scared.There are two rules we put in to help me survive. So that ANYONE interacting with me should understand:

1) Elizabeth is allowed to be selfish for survival. I don't have to be a good host, I don't have to make sure everyone has a drink. I don’t have to use all my energy getting back to people (though I keep trying). People forget this a LOT, because for posts, for blogs, for emails for minutes, I seem LIKE THEM. So they want to tell me adult problems, or engage in adult stuff and I am SUPPOSED to go, "No, I am no longer converting (converting oxygen correctly)" or “No, I don’t really understand, this makes me feel bad.” But I don’t. And people forget.

2) Elizabeth is almost certainly less old than she will appear to be. While I have the memory of the vocab I am not often Dr. McClung. Sometimes, occasionally, and it feels like flying, but I AM brain damaged, I have seizures daily, I have limited oxygen going to my brain and I am regressed. I am usually 10-12 and I am scared. I am scared of new people, I am scared of angry emails, I am scared of people when they want to unload and tell me how THEY are scared. And I go from scared to terrified because if an ADULT is scared, if an ADULT is telling ME, who needs help to breath and has to wait for them to move me, that they are scared, or have financial issues then I am terrified. What parent 'unloads' the financial, job worries, etc on the 10 year old? Not many, and the 10 year olds who have it happen to them probably aren’t doing very hot in school (acting out, retreating internally, etc). I can’t be the tough little girl who takes it all – not with a body and with pain like this. Not when I feel like people are beating me and no one can tell me WHY or WHAT I HAVE DONE to deserve this?

What is left: that person, the Beth, the 'Bethie' is someone who needs comfort. Someone who is confused, and who needs love and caring. That is also why the wishlist is full of manga; because it is what I, in THIS brain, can use….some times, to distract me from the pain, to survive the hours from when one adult comes and another adult comes. You see, this morning, I couldn’t take ANY pain pills because there was no drink, so I waited until an adult came (my caregiver) because she knows where the drinks are (how can I not know my kitchen? Well, have I gotten a drink in the last two days? Not this week.). I cannot blend a smoothie: not when my hand cannot even pick UP a strawberry after five tries as happened today, each time growing weaker. Yes, I am SURE there are better things, more medical things to put on the wish list. But since I CANNOT have narcotics, and I will explain why very soon, I put on the one pain killer I know which works for me, the one thing which might make a smile which releases endorphins and decreases pain: manga. Is it selfish? Yes. I don’t want to be in pain. I don’t want a play station, I don’t have a TV, I just want something (a manga) that I can drop five to eight times without damaging it and pick it up again and use it.

At the hospital I found out I was malnourished. Just like someone who was living on the street. Just like a sailor at sea in the old days. I was eating what Linda was but the energy to eat it, process it through my body and excrete it was being wasted because it wasn’t absorbing the nutrients. The amount of times my systems ‘crash’ (one of the three rules of my disease, beyond that I will always get weaker from the moment I wake up is that any system will crash at any time for no reason we can understand), is several a week. I have not had a week, I have not had three constant days of eat, sleep, rest, or even eat, sleep, work instead of eat, emergency, sleep, emergency, work, eat, sleep, emergency in at least the whole of ‘Otter’ which is June (it says that on the bottom: June - June is a book company...it is a confusing word)).

Every single nutrient that is not absorbed has its own disease, and of the three nutrients they ran, I am off in two of them. Having hair fall out is scary, what about having loose teeth in a few months because of scurvy that frightens the hell out of me, or rickets, or so many other diseases. And to find out WHY, WHY, WHY I need a GI specialist, and to get the GI specialist I need a GP and a referral. And even then after all the testing what if they say....it is part of the disease? That there is absolutely nothing they can do. Because this is just part of autonomic failure of the peripherial systems regulating extraction in the intestines. The amount of Florastor has almost doubled, the only probiotic which seems to at least be holding the food through the system and give it a chance; a few months supply and we opened our last bottle a few days ago (it is here on the wishlist if you want to help).

Let me explain what this means in terms of medical costs; our food costs are now significantly higher because almost ANY raw fruit or veg will cause a complete system flush. When say complete, I am saying if you are eating strawberries, then after five hours of cramps and pain, you will see bites of strawberry, completely uncoated with any brown (also meaning NO NUTRIUTS were absorbed) coming out. So now, to solve that, we blend it, I drink my food. We blend strawberries, we blend ice cream and milk, and bananas and all the foods that have the vitamins I might need in hopes that we are slowing down the process. Because we don’t HAVE specialist advising us (actually though this was a nutritional specialist from VIHA who recommended it). It takes time. It takes more money. And then I need a pro-biotic to make sure it goes through the system at the correct speed and has the nutrients taken out. Florastor is the one that has been used for over 50 years. When you have Cipro for your UTI, and you have constant diarrhea, it is Florastor they recommend. If you want to donate for food or gatorade please go to ‘A girl’s got to fly’ as there is a link there. I drink about $140-160 of gatorade and powerade a month (that’s not a ‘insured item’ even though the Mayo Clinic recommends it). I have to drink caffine to simulate my heart, that is not covered either, nor are these extra food costs. Linda works to try and cover it all. Because she wants me to live.

So back to pain killers, and pain and suicide and talking about it. Because I WANT to talk about it. I have been so alone, so incredibly lonely I cry almost every day. I don’t NEED the ‘BIG ANSWER’ – what I need are people who are willing to risk saying maybe stupid things. People who try to find a way to relate, try to imagine and trying to figure out as we go along what the appropriate boundaries are to this all because they want to show me that is it OK to talk about death, dying and pain. That is what I need. That is what will make me less scared and less alone. I don’t WANT to die. I just don’t want to be in constant pain. Linda says I look like the girl in white sometimes, all the life drained and beaten out of me, as I try to hug, to go through the motions hoping it helps her, hoping it helps me.

So the problem is that as the doctor said, ‘I have found that whatever they tell you the time is, it could be twice that.” Meaning she has had people who live five years after given two or even 18 months. And while that is sort of great, there is a BIG problem. The problem is that if I go onto narcotics, with the stepping up (remember, the doubling and quadrupling) there comes a point where it doesn’t go any higher – the pain isn’t reduced any more. And what if I still have a year to live. Well, they can’t TAKE me off that drug because I am physically dependant on it just as any addict would be, without me going into withdrawal – which even at this point would probably kill me (I am not on anything that could give me withdrawal). So I have a future where I CAN get pain control, or better pain control, if I can survive a few months without going insane but what if I live longer and my disease just increases my pain beyond what can be given to me….and I still have six months or a year of life left. A year left at a level of pure, unimaginable pain. It terrifies me. Right now, I have dreams where people are experimenting on me, are taking off my skin, are sawing off limbs and AS the pain medication wears off, then I simply wake up and lie there, unable to move, in pain, wondering if I have all my limbs. In pain until I can call or get the cup which has the sedative and pain killer for another round (or Linda helps me take it as she does during EVERY night). I have to be sedated because the pain killers are NOT enough.

So on the one hand, the future of living a better quality of life which I and Linda and others worked for two years started today. But the pain has caught up with us. As have other complications. And the futures that are in front of me, they terrify me. The terrify the child me who only understands, “IT HURTS!” and the adult me, who can see all the possibilities, who can map it out mentally: she is totally terrified. She wants that extra energy, yes, and maybe, as we talked to the GP, she said if the pain clinic would agree, my caregiver could have the narcotic for use once to three times a week – for the WORST times and THAT would not get me addicted. And that would prolong things right. And I could go to hawaii and laugh. And I could blog about the farmers market we went to today, and I will. But first, I needed to talk about this. I needed you to understand that I am regularly in pain, maxed out on pain killers that are above the limit, and the GP’s know that, but what else IS THERE – and I am totally immobilized and moaning and I am so bad, so painful and horrific to see that Linda walks out. And if Linda walks out, then I think maybe a lot of you would too, I think maybe I would too. And she hasn’t done it often, but sometimes it is too much for her. To see what must be my body ripping itself apart again, again and again. Too much for her....JUST TO SEE IT.

What do you think it is like to live it?

So when I ask for a shotgun, it isn’t a cute joke anymore. And if we keep pretending it is, then I will simply be alone. My grandfather died humming, he died humming and that is how I want to die. And to read this, you will need to accept that I will die, and that it might be one of the more ugly deaths. “The last few days/weeks/months were bad.” People say. They can talk about marriage, and starting life and college and pregnancy and children so lets talk about this. I already know it can be bad; share your stories and let’s just talk about it. Adult and child Elizabeth are already terrified. I did palliative care a little as a very young teen so I know what someone being in pain and swearing and screaming looks like. I am past that. I want to LIVE, even if it IS drinking my food. But after three days of terrible, terrible pain, it is hard to live. There is so little joy left. It is hard, even now to distract myself with shows, or art, to find joy when the pain pours down and over me, trickling into every part of me like rain.

Weekend of passion & colour: Soap, Stoneware, Jewelry, Postcards

It seems that when disabled, and in pain (a LOT of pain) then the pleasure is found in the small spaces: actions between the uncertainty. I was woken by the sound of three trucks and two to three jackhammers today as the “three day” demolition job (according to the project manager) goes into its third week. So better to think on the nicer things that happened this weekend, amongst and around the unpleasant.

On Saturday it was overcast. Overcast means I can go outside! So Linda said that if I could make it out of bed we could go to the James Bay Market (instead of the Moss Street one – our city is blessed with Markets). By “make it out of bed” she meant, if I could move my limbs, as I could not the night before, and I think even Cheryl was having to help me move my head. But as a friend with Lupus told me, “the more you move, the more the pain starts to go into the background…” (the rest of that is, “….and after about four hours of moving slow, then a bit more, you are ready to go.”). I had to be ready to go in 30-40 minutes, and made it out the door with some help from my friends.

I was wearing sweats and had no money with me, and Linda soon ran out of money so it was more of a ‘lets see what is possible’ event than a spending spree (though if there is something you are love with, please speak up as we will definitely be going back). The first thing I saw were the skull pot warmers. I mean, what says goth but using skull warmers to take out the Tuna Casserole. But then I started to think, “how will guests feel about my Borsch as it sits on the skull and crossbones, universal sign of danger and death?”

I rolled on, over grass (it was held on a field) to Mystic Glass Creations. Tyler, the owner and crafter, blows his own glass, though some of the images are etched with laser and then the glass blown around them. Most items were in the $15-20 range, like this necklace which changes colour as the light reflects off of it from different angles. I liked that one. We have at least one reader who is into mushrooms and they were a steal at I think $10 for your own personalized mushroom necklace – what perfect accessory for your next meeting (confuse them to bits!).
Tyler also does scenes of West Coast Tide Pools, which were made entirely of blown glass. They are complete with anemone, starfish, sea cucumber and the rest. He creates them by blowing glass and then shaping it down into a disc shape before doing something called ‘imploding’ which sounds pretty neat and is what brings all the colour up into the shapes. Everything in these tide pools is made out of glass. Cheryl and I thought this one would be perfect for Linda. She REALLY likes the tide pools necklaces but the one with orange she wouldn’t wear and the one with the blue and purple I thought was perfect for her. But she said she probably wouldn’t wear it. Well, today she tells people at the office and they think it is really NEAT, so where is it? So now she is thinking that if she DID get it, she would wear it. However, like I said, if I like something it is expensive, while the rest is $15, the tide pools are $60 due to the extensive labor in glass blowing.

From there I went a few stalls over to Katy Adams at Living Earth Pottery. She makes stoneware and other pottery and much of the red pottery is again in the $15-20 range. This bowl is one of the few blue ones she has left. It is microwave and dishwasher safe and hardy due to being stoneware but also barely a few ounces, certainly not a pound. Both Cheryl and I, used to the weight of pottery were impressed by the light weight. The bowl, was of course, $35 (if I like it, just double the prices you see on other items and that is what the item I want will cost). The problem was it was too big for me to use as a bowl, just a little too large, as the liquid inside is too much for me to control or hold, even on my lap. Then I saw THE PLATE. I loved the plate, it was a beautiful dark blue with black etching. The black comes from wax which is used to decorate the plate after the stone ware is ‘thrown’ on the wheel and put on the batik overlay, then in the kiln, during the glazing process, the wax melts, leaving a shadow of itself behind, the black decoration. Of course, I like THIS so as you can see, it is $55. Sigh. Oh well. She does do commissions but told me she is booked up until July 2010. Did I want to put myself down for a color and a commission? Sorry, not quite that optimistic, not when the hospital results say I’m medically malnourished.

Linda was returning from Whimsical Preserves with her jar of Peach Nectarine for the morning toast. Each jar was $5 and .25 if you return the jar. I was impressed with her delightful diabetes safe jam, which was not just ONE, in raspberry as you see in this picture but was a total of three rows, of which only two rows are in the pictures. I was also impressed simply by the experimentation and delightful colors and ideas, like this Fire and Ice wine Jelly, I mean where else does one go to get your ice wine (second ingredient) in your jelly?

There was another passionate soap lady name Shelia Adams, who sold not only the regular array of multicolored soaps you can see behind me, but also soaps specifically for men for shaving. Not your average soap, which came in Sandalwood. I asked if it was real Sandalwood, as I have heard that is very expensive and she said no it is a synthetic compound (the regular soaps were $4 each, the Sandalwood lathering soap was $10 – or about 6 pounds). The soap is specifically made to reduce the drag on the razor by using Fullers Earth Clay and then Shea butter and Goats Milk to reduce any irritation.

I loved the swirls in her soap, particularly the ones in Olive Oil, though I couldn’t stop thinking of Popeye. The woman was very dedicated and had bits of soap for people to rub for the smell. For example in her Slice of Citrus, she not only had orange, grapefruit and lemon grass but would take the peels, and shred them up and then add them as zests for exfoliate.

Linda picked up her favorite, Lavender. When we went up island, a gift of Lavender Massage oil was spilled (onto her clothes) though it was sealed but enough was left for us to give each other Lavender Massages (I recommend it, particularly IN a two person hot tub with jets). So she picked up a bar at $4 to keep the memory and go to work smelling Lavender fresh.

Of course, what west coast market is complete without the tie-dyed clothes. There used to be a woman selling lots of tie-dyed clothes at Moss Street Market but she moved to Australia (long commute). Another woman was selling here. I liked these baby clothes in tie-dye. I had bought several things as gives for my unseen nieces and nephews when Linda went to visit last time, like hats or a tie-dyed purse for the 7-8 year old girl (she loved it). The children of the conservative father, I sent only tie-dyed sun hat for the little girl and socks for the boy. Apparently they were NOT used, possibly because he did not want to expose his 2 year old and 4 year old to this kind of drug culture clothing. Errrrr……what?

By this time I had talked myself blue. It is funny how these expressions must have come from people with my conditions because I CAN talk myself until my lips and fingertips turn blue. So it was back into the van and air conditioning and then back home.

I took an hour at home to take pictures from the art books which I had marked with post-it notes for pictures. The weekend is the only time I have enough people to help me hold open the book and take the pictures for the blogs of the coming weeks and months.

Regarding postcards and Stickers, FINALLY, this last week I had sorted out the corner behind me thanks to Linda. She gave me a three drawer plastic cabinet and I gave two drawers for stickers, one for kids and one for adults and then sorting within those drawers, and one for postcard books.

What I wanted from this time on was for me to spend more time on each person, which meant more time on each postcard. Time spent in selection and time spent stickering (which has been neglected lately) and deliberate stamping. I wanted to improve. But I didn't want to make the postcards more flashy or crammed with more on them, indeed I wanted more open space to write. But I wanted to refine what was on them in order to make them better, closer to greatness. So that is what we did. It took longer to sticker and the table was full, first of all the children’s stickers and the adults. After that, we went into stamping, having a good idea of the theme in mind.

To give you an example, in the top postcard I made a linear link of colour stampings of the history of the cat starting with Semet, the Egyptian cat god (in purple). Then a stamp of the wild cats before the stickers of the domestic cats (I didn’t quite have enough room for a color rubber stamp of that). The one below it combines the colors of the kimono with the flower sticker and the sticker which is one of the ancient family crests of Japan, which is reflected in the colours of the Japanese Fan color stamp. It took longer to do, it took overnight to dry.

Function and pain-wise, I was having a bad weekend and at points could not use my hands, or, due to pain, was not understanding what was going on, or even where I was, only the pain. So, when lucid, I estimated the maximum number of postcards we could do was 35 based on the time left and how much time I had to write the postcards, which I placed at six to ten I could write an hour if there were no breaks, four to four and a half hours straight. It turned out that I had miscounted and 37 postcards were done and have already been posted a couple days ago.

Though I have many postcards (like several hundred) I am in desperate need of great quality postcards. The problem is that, as we say, 'we get them in, and then we send them out.' So if someone has a very specific request or style, then the regular postcard isn’t going to do (many, many requests for postcards of the moon). I can’t send diners, or just any old scenery, or even any old cat photo, I have to send postcards that are ‘more.’ Some come from Oxford. But they are going (any postcards of illuminated manuscripts would be greatly appreciated - seriously, along with clear, large and colorful ones of the animals specific to your area of the world – something that would appeal to cognative disability programs or children, particularly those in the autism spectrum). I am hoping you understand? I can't do this alone, and I want to give EVERY person the best.

To give you an example, I bought a set of 12 Lamento Postcards online, and sent them out, catboys in anime. That set is now going for $100 (just 12 postcards). I finished a postcard set of Hawaii, it had good detail, excellent colour, and a map of Hawaii on the back; I thought I should go get another. Except now it is a rarity and selling for $50. Some postcards I bought from Amazon in German in order to get a particular photographer. We are almost out of Escher, and Ansel Adams, and Frank Llyod Wright and graveyards in black and white……. I am desperate to find the highest quality postcards, many do come in, from all over the globe, and many which I have purchased from all over the globe but they go out just as fast!

This week I cleaned out a limited edition box set (perfect size and quality for stamping, excellent colour and variety) which went out, now out of print, with special limted edition stickers on it from an anime series showing adults both straight and same sex couples in love. Those stickers? Turns out I bought the last box when I asked the supplier in Japan for another (out for 2-3 years). It was $55 and shipping for the box of 40 stickers and yet, the quality of the stickers was ‘more.’ To be honest, a lot of the best of our stickers and some of our postcards come from readers; the Dr. Suess stickers – what fun we had with those. Postcards, sometimes just three or four and immediately we put names on the back, recognizing how this will make person 431 happy or person 67 content or person 274 simply not able to believe we found one. I have to take the credit because of confidentiality but thank you to those who sent in the postcards which were ‘more’, the stickers which were ‘more’, which were gothic and sassy, which were perfect for kids, which were Japanese monsters, that postcard made of a giant rubber squid.

So that was the weekend, Saturday and into Sunday and I’m not sure why I went on so much about the postcards except for two reasons: 1) I am only a single human being and cannot actually GO places, plus I have a limited viewpoint – other people CAN go places and have lots of viewpoints (like if you know where to get Edgar Allen Poe or Edward Gorey postcards or postcards showing the 17th Century? I'm serious and those are just one small subsection, about 10%-14% of the 40 we send out a week). And 2) I wanted those people who get the postcards and anyone who has ever participated by seeking out the 'more' postcards and stickers, or sending in from an extra stamp to a sheet of them to know that every week what they did mattered. But also, because of THEM, and for me, I try HARDER. I try to make it so that each postcard is the best it can be, that each postcard is amazing or the RIGHT postcard for that person, even if I could use it for 40 OTHER people but it would not be just the RIGHT fit as that one person, and I will never see that postcard again. And I may have just taken it out of an envelope from someone who sent it to help less than a day before. You also never get to hear what happens to your postcard, like a solo played in the night, you never find out who heard you, and what it meant to them, what difference it made. But YOUR postage stamp is on that chosen postcard, and it wouldn’t be possible without you.

I wanted people who get the postcards and have gotten them to know, that I am human, and I fail but I do try, with all my mental powers that I have that week and my ability, indeed beyond my ability, to make sure each postcard is correct and the best one for you. That is my goal, and sometimes I succeed and sometimes I fail, and without Linda, and Cheryl and other unnamed and sometimes unseen hands that would not be possible.

As I learned in the ER; caring with full concentration on what the OTHER person wants or needs is what makes the difference.

There are times that Linda HATES the postcards, the project, the ‘surprise gifts’ because she sees the pain that I receive, over and over again. She hates the fact that I can send out 50 postcards, that took me four or five days of late nights making them and the last two nights I was working straight through, and she KNOWS that I will never hear from any of those people. I KNOW.

Cheryl will bring over for another week nothing but postcards from a single individual, sometimes a letter from the same individual and then the supplies I have bought myself. Sometimes it is week after week, like that, and week after week, I pour myself out like a fountain. Linda told me that she does not ‘believe.’ I go on day and day, week and week. Today I showed you the postcards in hopes that you liked them, it is true. But I will go on for a week, for two, not having received a postcard, an email, for three weeks, for four, no packages, for five, for six, for seven. I go on, hundreds of postcards sent out and as I completely open myself, committing myself to loving someone in the way that is needed to think only of what the other person needs for hours then I will get hurt. I will hurt very badly, attacked, isolated, alone, simple, childlike, crying. But I go on because I believe. I believe that if I do it right, if I do it often, if I do my best, that some of them will intersect with unexpected results. To break solitude, to help foster joy, to simply be there when needed, and in many ways I do not know.

Linda cannot stand the sight of me unable to sit up straight, half my face smiling as I had a TIA (mini-stoke) because I am finally done. She gets angry, she says when I am lying down, after the painkillers and the moaning and shrieks, with tears running down my face into pools in the pillow in order to keep my face straight, to keep myself from groaning in pain. My body, broken to serve.

Send a card to Linda, because she cleans up the pain, she holds me while I sob a broken heart and then start again. She wants to scream in frustration but then sits down and helps me sort postcards. If you cannot write to me, then write to her because I do believe. Somewhere out there, something has happened, is happening that makes the fusing of work and agony worth it; because I do not see it, because I do not hear it does not make it less true.

That was my weekend.

Pets: Getting to know you....

Why pets at all, I mean we have humans, right, so why pets? Well I think there are many reasons, and I’d like to hear them. For me, I always enjoy having and bonding with a mind other than mine, and more important growing to love and be loved by a mind, a personality, and a creature different to myself. It gives me joy and satisfaction and is something I miss in this apartment. Hooch the therapy cat visited again this week, only she came before feeding so it was a short visit because Hooch kept going to the kitchen, back to the travel basket, then to the kitchen, then to the travel basket, then looking inside the travel basket. Yes, Hooch, we got the message (“Hooch hungry, let’s go!”).

I have to admit that I like cats, and while the line is that nothing is more fun than a barrel full of monkeys, spring and this time of year bring a litter of kittens, along with the curiosity that comes with kittens. They seem both scared of anything, and yet willing to stick their head out to find out about it. In this picture I feel for the poor kitten who in exploring has fallen off the edge and simply wants to be up there where the fun is, as a person who is sick and indoors, I understand that feeling.

But I have started to understand and be more open to dogs since I have had the wheelchair. I am near a leash free park and I get to sometimes throw the ball thrower so the dog can chase it, when owners let me. Dogs like to come up and sniff me and there are all types of dogs. Linda likes the little dogs, she loves the little dogs and how they look. Maybe she likes that you can pick them up. For me, I am a BIG dog person, there is just something about a big dog that has always attracted me, even from childhood, I wanted a BIG dog. We got a spaniel instead; actually an inbred spaniel that could run after its tail for about an hour and move at the speed of light. Just perfect for exhausting two kids. Also perfect for knocking us over in order to get at treats. Dog tend to have FOCUS, whether that is loving and greeting you, or getting treats.

There is always the case where the behavior of the pets and the owners start to be somewhat similar, and while this is often pets acting more like the owners, sometimes, the reverse happens, like this girl and dog going to for a wild bound in the water. Or more likely, people gradually finding themselves taking more naps in the sun. I think though if your child starts running back to you with a large stick in its’ mouth, you might need to draw the line.

Schools often has animals as pets, each class sometimes having a different one from turtles to guinea pigs, often in elementary school. Having seen a few hutches in Japan, it seems that rabbits and sometimes chickens feature as ‘school pets’ and mascots – which with US football, it is not uncommon to have a goat or other larger animal as the school mascot. What animals did your school have, and did you ever take care of them. I remember only the very trustworthy got to take care of them over the break – which oddly wasn’t ME. I wish I could remember, I think there was a turtle, something that ate lettuce.

I know growing up that getting a pet was often a sign of ‘responsibility’ – meaning I, the child had to be responsible for walking the dog or taking care of the budgie or taking care of my two hamsters Jezebel and Nimrod. This sometimes is an issue in all houses because children are not always the best at focusing and prioritizing and once distracted can forget things like walking the dog. However, as we learn as adults, “when you gotta go, you GOTTA go!” and that doesn’t change if you are a human or a dog; so what seems so obvious to an adult; “It has to go to the bathroom, take (insert name) out!”, or “Would like to be treated like this.” Or “I can stand your room being a mess, but not the litterbox, you are being cruel to (insert name)!” Of course, the other thing we learn in childhood is that while dogs have to GO every day, and have to be walked, there isn’t always great weather every day. Sometimes nasty weather. Darn, they never told us THAT when we asked for a puppy. Though, it seems that if you have a dog that likes the snow, that can be pretty good. I had a Samoyed when I was young, which is a white dog like a husky that the Russians used, it is loyal and likes to pull, and play. And it LOVES snow. My dream was to do that 1,000 mile sled race and be the first person to win it with an all Samoyed dog team

Smaller indoor animals are often a first person’s pet. I don’t remember whether it was a hamster or a gerbil I had. Ours had the sort of split level house where the gerbil could do the wheel and then if they wanted go up this tubing and have a lie in the ‘loft’. I wanted a really complex maze as I think one of my friends had where there was lots of tubing. I remember now that when I was very small, about three, my brother or our family, since my father USED to be animal obsessed (and we would watch TV with all the animals, the puppies chasing the things on the TV), there was a mouse. And I remember the announcement after much hunting with no comment that just as I was to go to bed, the mouse could not be found. Oh no. MOTHER had to be told and there was much hunting and yet no one could find it. Well, I managed to as I put my legs in my bed and it zipped across my feet and then straight up my pajama leg, with much high pieced screaming. Of course, while I am being traumatized for life my brother is shouting, “Don’t let it go!” DON’T let it GO! It was running up and down my leg under my Pajamas’, I wanted nothing more than to ‘let it go’ and somehow as desperate mice do, it got up the waist band and headed toward my face. Now the high pitched screaming was added to with arm flailing (nowhere near the mouse, have no fear, small children had terrible aim at times). The mouse was caught and returned to the cage and for the next long while, I had my parents CHECK THE BED before I would get into it. Wow, a childhood memory for writing this blog, that was cool. I hope you remember some too.

May I point out that I have no real problem with mice, it is Linda who doesn’t like them: spiders on the other hand, I get the hysterics and of course they go into a box and can’t be found and then I can’t go near that room or area for the next month. So when I scream, Linda comes and deals, and when Linda screams, I come and deal with it. A lot of people also like mice as pets, as they are often, if the variety is good, a nice color, they are very tame and can be taken with you. I can see the attraction in that, except for the part where Linda screams and claws and my face every time I play with my mouse.

For bees, I am not so loving it, which I got from my mother. A boy at school in my class KEPT bees as pets, and only had a few stings, he now makes bridges for a living so I guess order or hives interested him – probably had an ant colony, the problem with that is they break and the ants um….GO! Well, once we were driving and my mother had a bee in her hair, and SHE was driving. Since she always screams and flails, I asked her to pull over in my ‘calm voice’ which of course always terrifies everyone because people want to know why you are acting so calm. I trapped the bee, let it out and THEN told her; since the chance of us going off a cliff could have been high if I told her before. As for ants, you don’t need to MAKE them as pets, just eat in bed. In California or in the UK, it was an annual battle in the summer to avoid noticing an ant, then looking at the carpet, then really LOOKING at the carpet and suddenly noticing that there are about 1,000+ moving things on it (that REALLY freaks me out!). So no, not loving the ants. Once my parents made me feed the cat of a woman down the street when I was 8 or 9 and when I went in, the ants had TAKEN OVER, there were lines on the floor, not one but five or 6 every room, lines on the walls, on the ceiling, everywhere. IT was a horror film. I threw down the cat food in the dish and ran out, then dreaded having to go back each time. But that is California, ants can take over your place in like a DAY.

Rabbits are popular household pets. I had several friends with them. Because they are cute, and they hop, and they let you pet them and they are SOFT. Beyond that they seem to chew and shit. I am sorry, maybe some rabbit owners can enlighten me on what else they do but I spent summers around them and they were always there, they sort of sat there and ate, you could pick them up (possible shit alert!), and pet them, and then put them down and they would hop a bit. I presume they had sex at some point but since they never seemed that active, I can’t really imagine it. Now, I can see the rabbits I want up at the university where a few are now literally in the dozens if not hundreds. And they hop and hop and will eat out of your hand and they have all different colored ones including velveteen rabbit looking ones and white ones. The hospital used to have some in the grass, lots, which my grandfather liked to watch when he was there but of course, they were labeled a ‘health hazard’ and then kille…..I mean, all taken away to a nice place where they could eat all day.

Then there is the pony or we can include all 4H animals like cows (often boys will raise calves or pigs for show at the 4H – I have no idea what 4H stands for). Of course there are two types of girls growing up: those who draw horses in class in their notebook and read Black Velvet and other books like that and those who don’t. I actually read the 20 odd books of the author who did Black Stallion which usually involved a Stallion who couldn’t be tamed (except by LOVE and patience), and a deserted island. Oddly, the ones who tamed most of the stallions were boys but the books were read by girls. For those boys who wanted to ‘love a horse more than a woman’ there was always the 200+ books of Louis L’Amour, which also included lots of GUNS. I did not however draw horses heads in my notebook or ask for a pony (I live in LA!). I did however once we moved to Wales, go immediately to the horse club and found out that the membership was HIGH (like 100 pounds a year), which then I found out included NO riding, but EACH ride cost MORE. Ouch! I didn’t have money like that. And besides they all wanted to do ‘The Hunt’ and lots of jumping. While where I came from, North America, horses were ridden or raced. Indeed my aunt was a very good trap racer (your horse pulls you in a very lightweight trap around the racing circle), and had and may still have horses. However, since she liked light and fast breeds, and I was tall, riding a horse where you feet drag on the ground takes out the romance! It looks like these two girls or one of them is going to practice the Japanese archery Jyudo on the horse as the sport was originally created for (which is why they thought the wheelchair and I would be GREAT for the sport). So even in Japan there are horse loving girls. (are there horse loving guys?)

Linda didn’t have a pony or horse, but her sister did. I am not sure about Cheryl, since she is from RANCHING, I am sure she knows how to ride. My brother took a course in it, and learned all about cinching up saddles and such at college – that was his PE class, horse riding. That seemed SO UNFAIR – I had to do tennis in the sun and he did horse riding and got CREDITS! Another relative does the formal horse training, Dressage, and I always said, that while Epee is expensive ($5,000-$6000 to compete nationally, $20,000+ internationally a year), that is nothing compared to Dressage or the Olympic Horse sports, as while I can throw another blade in my gear bag, “just in case” can you imagine shipping TWO or THREE horses to each event? So for a not really that horse-type person, I sure seem to be around horses.

I did, like most children have an aquariam and goldfish and angel fish and the ones that have a strip that glow in the dark, and then some algae eaters to clean the tank. I did not sadly have my own mermaid, if so I would have become FAR more interested in the undersea world. My interest in the undersea world pretty much died at 14 or so when I did snorkling in the bahama’s and found out that I have extreme underwater agoraphobia. So since then any time a show descends the deep on TV, I start to freak. So having fish seemed a sort of lie to them: dishonest.

Lets go back to the two most common of pets: cats and dogs. First off cats (and to a large part dogs) the joy of owning one is that they have attitude all their own, whether you want that or not! Can a cat be trained to do anything other than teach those stupid bipeds how to open food cans and get them treats when ordered? Usually no. I like cats, and I always have because they are complex creatures and simple ones at the same time. Anything that vomits to say, “Hey, I’m a little anxious” is an animal I can relate to; I just wish I’d figured out how to do it in my father’s shoes.

Now cats, they do what they want when they want. And let’s face it, if we could make that particular stretch, wouldn’t we?

Do cat and dog owners choose the personality of their pet or vice versa? Where did you get your pet, from one of those boxes or someone who needed a litter of dogs given away? I always had feral cats. The cats have always had to be enticed over a period of time with food then eventually let in to ‘discover’ the house and then it would come and go as if the house was part of it’s territory. But at night or other times, the cat would simply TAKE OFF, because it was a feral cat and it needed to go places and see things. And I knew I wasn't the only one feeding that cat, but that was part of loving it. It was feral and it like to explore and was gone, sometimes for days at a time. And maybe I got my travel bug from my cats, or maybe I just ended up with cats a bit like me, having lived in a lot of countries and a lot of places, I got things to see!

Before we go on, I think we need a break, which is basically, a little breather for me, something where I can combine by two enjoyments in life....um, trying to find the right bikini (a new passion!), well sort of, and then add KITTENS, almost everything is better with kittens (NO, no! No blender jokes!)

I like kittens (who doesn’t) but you have to keep you eye on them. As a kitten can sometimes be a bit like a two year old boy: how exactly do they make the mess they do so quickly? Kittens like to explore, they like to pounce, so if you HAPPEN to leave your manuscript of important papers or your poetry bound by a STRING lying around well then the cat is going to attack the string isn’t it? And it will keep attacking it until it has won! Woo hoo! String 0, Kitten 1 – and all those paper things flew away too, how fantastic! That is how kittens think. Oddly, the person whose papers were bound sees it different.
This can sometimes lead to extra work for the owner of the more curious and aggressive of kittens (stories?).

Cats, like humans, don’t like being excluded, and sometimes after talking doesn’t work, and scolding doesn’t work, there has to be the ultimate punishment. Yes, I am talking about, putting them outside or outside that area and shutting the door, and no matter how much they scratch to get in, try to ignore it. When I moved into the alternate bedroom at my parents, well that bed was where the cat liked to use as a jump pad to see out the window. I was woken by scratching. Then as it saw me move, it stopped. I looked at it. She looked at me. I lay my head down. MORE and MORE scratching. I moved my head and looked at her again. She was sure I was going to open the door. I came over. She was ready to enter. I lowered the blinds on the glass part of the door and watching her, slowly closed them. There was another few minutes of scratching but she got the message and never scratched another morning – woo hoo, opposable thumbs win again! (pretty much our ONLY victory over cats! They can think faster, run fast, squeeze tighter, have more sass and attitude and not only that, have better psychology in training us to do whatever they want. Plus they have the 'cute' factor!)

This is why instead of being in rapture at the thought of cat girls, guys should be terrified. I mean, after several thousand years and best-selling books guys still don’t get women a majority of the time. Women, like cats are mysterious and can make men want them more just by leaving with sass and a “later” – now combine that psychology and cat psychology and that’s it, this is going to be Cat-Girl owned planet. And all the guys are like, “Yeah…..whatever, as long as we can see them at the beach….look that one caught a dolphin….” (drool). See, this is what I am talking about, the cat-girl revolution will be a quick and bloodless one where men are involved.

The advantage of cats is that when depressed or down, being comforted by a cat isn’t comforted by someone who often gives unconditional love like a dog (I am sure I will be corrected here!), but rather an non-speaking individual purring against your chest. Comfort of a warm body there. Of course the problem is that sometimes they won’t, and they ignore, but still, they care enough about you to vomit on your carpet if you are away too long.

Dogs will attack if given the opportunity and as this picture shows, it can be sudden and disorienting. And, please do NOT try this at home, they have a knack for ‘showing their unconditional love’ at times when you kind of don’t need it, like the cat opening and closing claws on your breast, when you are getting dressed, and half undressed, jeans heading down toward ankles…..this is when they jump up to ‘love you.’ This happens too often to be an accident, I think that these are planned acts of humor and dogs later compare the situations they got their owners in; “Yeah she was all over the floor writhing from tickling trying to order me to stop, hee hee.”

There seem to be dog people, and they love their dogs just as much as the cat people love their cats. They will carry them everywhere if they can. And if I had not moved, maybe I would be a dog person too, but that early separation, and then finding a feral cat, a cat that had been waiting to be found, waiting for ME, maybe that made me a cat person. A dog, particularly a large dog can be a major friend and companion while growing up (or while grown up – particularly when it jumps into bed while you are sleeping). I will warn you though once you decide to go to college and take your dog, or as an adult, I have it from many sources….Dog are voyeurs when it comes to YOU having sex. Try to train them to stay off the bed.

Now when it comes to sex, cat are likely to sulk and disappear – yes, they are the envious and scorned lover and they withdraw affection. You have sex with someone, that means they are more important and they go away and then you have ‘make up’ cuddling with the cat.

Cats like to go where they go, and then they expect you to rescue them, like up a tree or down a dock or to ‘escape your apartment’ for the 100th time. When they decide they want to come back, they meow and order to ‘please be returned to my abode’. Looking at the behavoir (except for the leg stretch and lick thing) I actually think I am becoming a cat.
For cats, many are shy, and while they will purr, it is the open displays of affection, the licking of the cheek which is the way of a cat giving you a gift, because that is what they are waiting for, like the rest of us, someone to love.

It is shown that people who own pets live longer, no one knows why for certain, but certainly the joy that pets bring must be part of it.

Linda drags Beth to ER: Beth not well, but released anyway.

I don’t like going to emergency rooms. This is because I am an individual and most emergency rooms view people as being part of a ‘parameter’ – meaning, ‘Will they live? Then get them out of here.” Indeed, the doctor who looked at me told me that in THIS case it was acceptable I came into the ER, and could in the future, assuming I could not get to a family doctor.

The reason I went to the ER (or was taken), was because I could not stay awake, after 9 hours sleep, I quickly was fighting sleeping, before falling asleep and would not wake up. Linda woke me after over two and a half hours and several tries but at the time I could not move, or even speak to start. She tested my BP and I was 90/40 and just over half an hour later 100/53, and that was AFTER she had moved me to a seated position. Over the next hour my BP remained as low. So she packed everything up and put me in the van and we drove to ‘the other hospital’ the one which is not ‘one of Canada’s worst’ according to the doctor who works there. We waited, with me slumped face down, and my lips with a bluish tinge (according to Linda), for 30+ minutes to see the admiting person in order to be registered to wait in the waiting room. In the waiting room: People were there with babies who had fallen, or 2 year olds who had a sore shoulder. After about 2 hours, I was admitted into the ER and given a bed. The bed was fixed and unlike other facilities did not go up and down so like, people in wheelchairs can transfer over. The person taking the admitting information had told us she would be back to get our conditions and medications, but she did not. Nor at any time during the entire visit did anyone look at the medical alert bracelet. This makes the cost of taking the ambulance almost worth it as things like ‘can't sweat’ or ‘trypanophobia’ (needle phobia) or ‘oxygen therapy’ or ‘multiple system atrophy’ actually make it onto the chart. I mention that because these are the four things on my medical alert bracelet and these are the four things in which the ER personnel actively endangered my health.

I got on the bed; and a woman came to take my blood. She was an angry woman who said things like, “If she isn’t ready then I’m not taking any blood!” or “If her vein isn’t right, I’m not even trying.” She either had not heard of trypanophobia or did not want to hear about it as she said, “Fine!” in a "I'm fed up" tone and then turned around and left. The Emla was put on in the waiting room so the tech could take the blood as soon as I entered the ER, but that tech did not return for over another two hours.

I explained to the head nurse that there is a medical protocol for trypanophobia as it kills, and has killed 23 people actively (by causing cardiac arrests), many more are killed passively by lack of treatment like mothers who won't get ceasarians, or the diabetics who won't take the insulin. Those 23 were noted in just one journal article. The response was, “Yes (23 died), but out of how many?” This seemed really odd to me. My understanding of ‘Health and Safety’ is that if you do something like find out that people have Swine Flu, instead of asking, “Yes, but how many are dead?” And if the number is below 50 for your country you do nothing, you institute a protocol, like asking people if they have returned from Mexico recently (which is up at every doctor's office in the area). And if you kill someone in the ER, or kill many people because of an action, they put in protocols to stop you killing people. Except in this hospital it seems, where, as open as a profit-conscious HMO, the question isn’t if people will die, but how many will die, and "what percentage?” Well, I don’t know, but since Trypanophobia (Needle phobia) has four types and most people with it won’t go to the hospital and only the type 1 tends to die DIRECTLY from Syncope which lowers the heart rate enough to go into cardiac arrest. And when the person who tells you they HAVE Trypanophobia is coming in because they have a low pulse and a low blood pressure, that seems a life endangering response (as the most common response to trypanophobia is a dramatic drop in blood pressure and heart rate). But to answer the question, considering how few go into the hospital and how rare the condition is, and how this affects one type of four, maybe .5% annually die, maybe 5% annually die. I don't know. Is that an acceptable loss?

I will state that over at Jubilee, the other hospital we chose NOT to go to, they have always treated my trypanophobia well, and put on emla, and a patch (we had to use our own emla and patch at this hospital) and followed our protocol exactly. Not like this hospital where there were threats, offers of being held down, or people telling me to wipe off the Emla (a topical anesthetic) as they are coming over only to NOT come over for over an hour (making the deadening process useless). It was not a good experience.

For some reason, even though my fingertips are purple, and the last two fingers of one hand is black along with part of my palm, the oxygen reading on the monitor continues to show a perfect 100 percent. We find out just before we leave that to stop my Raynaud’s giving a non-reading or if someone has nail polish, or any other reason, the oxygen is set to 100% default. If it can’t pick up your oxygen, and your fingers are black, it will read 100% oxygen. This is a GREAT idea for not having to constantly check people due to alarms (my oxygen alarm was turned off anyway as in talking to a nurse I managed to animate enough blood for it to read 80%, and the alarm annoyed her so she turned it off, and then didn't turn it back on). But the whole 100% default is not a great idea if the patient needs oxygen therapy to get better. Or as the doctor said, seeing me six hours later, “Your oxygen is fine.” And then mentioned I should ‘consider’ the possibility of anxiety or other mental disorder and the power they have over our minds.

As time went by, because no one was checking my body core, and I can't feel my own temp, it turned out I was getting hotter and hotter. This started a series of seizures which excited the ER, SOMETHING DRAMATIC could be done, like ativan or an IV. However, though we had told everyone that came by or in that I could not sweat, no one took it seriously. We were to find out that when the med student looked at my chart and asked, “So when did you first get diagnosed with MS?” they thought I was ‘heat intolerant’. No! ‘No sweat' means 'NO SWEAT’ it means 'heat stoke' (except it turns out that an angry and incompetant blood tech (she went right through the vein, with a butterfly!) can make me sweat slightly in the underarms, then it stops - so absolute terror still produces a small result).

The problem was, I figured out I was hot but post seizure, I couldn’t speak, then when I could speak, I could only speak German. Even the nurses’ and Linda’s superhot hands were cool to my head but no one figured out - hmmmm, if my hands feel cold on her, how hot IS she? Superhot blood was going to my brain and was going to keep giving me seizures, plus my resting heartrate of 73 (which with MSA is hardly enough for me to stay awake) was now 92, then 96, then 101 and holding above 100 – for lying perfectly still, almost asleep. I told Linda in german I was hot. So Linda used our ER break packs to cool my head and then asked the nurses for packs, and still they didn’t get it. We decided it would be best for my health to get out of there and that no, in a heat wave going to the hospital won’t be a last resort. So, I have a resting heart rate of over 100 (my theory is that my body was trying to get rid of heat by pumping it out to the extremities and back to the core (making the core where the heat is hot as it is working hard. The heart continues pushing the blood to the surface, which due to the fact I wasn’t sweating was simply making me hotter, and my heart rate increase). Linda said that I looked WORSE now, with my red face and nose and ears than I did when I had the blue tinged lips. The doctor, when he arrived saw no problem with a resting heart rate above 100…..and then suggested thinking about mental health services for things like panic attacks and anxiety disorders as ‘the mind can have a great impact on the body’. He included a pamphlet for me on dealing with anxiety disorders and panic attacks when I left. So it turns out that your treatment AFTER you have been actually BEEN DIAGNOSED with a named disease still means you get treated like you are the problems if the doctors don't know the disease. And thus it was all in my head, instead of, "Uh oh, rare disease, lets look it up and see what the potential hazards are?" - nope a lot easier to go with 'panic attack'. Now, as to the over 100 beats a minute heart-rate: I would like to inject the ER doctor with adrenaline 24/7 for a while to test this theory: that having a heart rate while resting which is the same as what you have while running a 5K in training (as I did 5 years ago, actually about 94 for running), that having that occur all the time is probably very fatiguing. That's my theory - not, "The books say people can have it" but could YOU Dr. ER, have it and keep your job? But then, individual patients are not the vision of the ER, just, “Can it live? Have other humans lived like that?” and "is the problem immediate to be dealt with THIS minuste?" not “Is that good short or long term?" Or "can they hold a career like that?”

My BP spiked when they took the blood, and as I found out this morning as I got a nose bleed (174/143). But then, I don’t go to ER’s for nose bleeds. Or blood out of the mouth or ears. We got the blood tests back and yes, I still have anemia, the same amount that Jubilee circled and wrote, “GP deal with immediately” – turns out that while I am below the Canadian level (which is far lower than the minimum UN levels), I am not low enough for a ER transfusion, which is below 70.

However, all four of my blood oxygen carrying aspects were also below the limits and Low – low red blood cells per volume, low amount of oxygen carried by each cell, hemoglobin, hemocrit, all low. The doctor said that they weren’t DRAMATICALLY low, like I wasn’t bleeding inside, and said "look my white blood cells were within the normal range." I sort of looked at him funny and said, “Good, because if they were elevated or eliminated, that would be a major infection and that would be ANOTHER problem.” He said that my anemia and RBC and other anemia related tests below the limit was not so dramatic that I would not notice a difference from yesterday (hence not the reason I came in), and then asked me: What is it you want to know? I said, “Well, those results might not make the difference that brought me here but I AM fatigued and have been for a year, so how CAN we treat it since my iron and my B-12 are normal? Idiopathic Anemia?” He said these things were best investigated though the GP and specialists. (insert hollow laughter) So no luck there, and no long term change in the fatigue factor, or as I pointed out to him, it is best to eliminate a side issue to see clearly the main disease. He said, “A lot of your tests came back normal, which is good, since you know, normal is good and something bad isn’t good.” I told him when I come to the ER, I want something dramatically bad (I can get crappy normal at home, why go to the ER for it). When you only get 4-6 seconds of a heart monitor strip the doctor sees, you WANT something dramatic to happen on it!

After all the 'normal' and 'Good' The ER doctor failed to mention that about 35-40% of ALL the tests including those for kidney and liver were ‘failure’, or lower or higher than allowed perimeters without treatment – that I had about 15 items that ‘required treatment’ according to the standards and perimeters set by BC medical and Canadian Medical Authority.

Linda noticed and questioned about a liver and another test failure, if they were likely due to hypothyroidism (she does her reading) and he admitted that he didn’t understand why I wasn’t on synthyoid as is was cheap and an easy solution. He did not however offer synthyoid (we asked!) as these are best done by your GP (or as he added, “Or in your case, a walk in clinic.”). Strangely when offering the results to take to the clinic he adds a pamphlet on mental health and dealing with anxiety disorders covering the top of a medical readout where 30-40% of all the tests are in the ‘treatment required’ zone. So 30-40% medical test failures but.....I given pamphlet on not having panic attacks.

So, since they were not regulating my heat, or my oxygen, or my heart rate (the head nurse did note and state that it was odd that after being giving Ativan which should LOWER my heart rate, given to me during seizures, mine instead went UP). The German speaking dropped out after an hour or so. Just in time to wait a half hour, then talk to the doctor and to leave.

I find it problematic as we went to the ER, but ended up using OUR emergency supplies to keep me from having more seizures - IN an ER. And I was without body temp, oxygen or heart rate monitoring (even after multiple seizures and a change in heart rate of 30%), they were and had endangered my health. After six hours without an offer of water or anything the doctor suggests I was lethargic due to being dehydrated and wants me, at 3:00 am to stick out my tongue. I do, he hmmmmm’s and that is that.

So, believing they never really understood my disease (or even the name I think since I don’t HAVE MS), I wheeled over and asked the doctor, ‘Since my disease has two main life threatening issues due to autonomic failure: first is stopping entirely of the heart and second is stopping breathing’ When WOULD I come to ER?"

He said that is a good question, and that if I came like I came today frequently then they would know it was a mental issue, but to do it infrequently due to a change, like I had today was okay. But for a stopped heart or stopped breathing (insert his laugh) ‘we’ve dealt with far worse than that, and that is not an issue.’

Wha? What is worse that a stopped heart and lungs due to autonomic failure? No head? And they fixed that? Also, if my heart stops in my home, how can he ‘deal’ with that if I have my ER experience I had today? How, when he sees me six hours later is he going to start by heart? If he can revive people after six hours of heart failure (or no breathing) I would think that either a) he is creating zombies or b) there is many, many cities which would like someone who can revive someone to normal after they are legally dead for six hours.

He suggested that I try some ‘alternative medicine’. I asked if that meant he thought my black bile was too high and my yellow bile too low, my phlem unbalanced? He said he had other people to take care of (this was irony as watching the monitoring board, we were the last to go!) and didn’t have time to talk about this.

“No 17th century alternative medicine?”

He turned away.

Odd. It was now 3:30 am and after being told that it was all in my head, holding test results saying “This person should be treated” including some that were circled with notes beside them. I had a pamplet on anxiety disorders and Linda now had the knowledge that if I stopped breathing, she could load me up, drive me there, wait 30 minutes to be admitted into the waiting room, then another couple hours to get into the ER and he would revive me, same for my heart. Yet, she did not seem comforted.

I went home, slept, got up, blew my nose, filling the Kleenex with blood, cleaned out that nostril and started another regular day. Linda and I decided, the Jubilee was faster, better and the doctors had actually heard of my disease instead of doing the ‘I’ll try to blind you with test results you haven't heard of....’ technique – wow, the ER doctor really did not like it when even when he went, “Look your kidney is fine, only the XXX is over the limits” and Linda said, “But isn’t THAT and indicator of hypothyroidism?” Linda gets a sort of ‘you are supposed to be awed and shut up’ stare before he says, “Well yes, it can be one of the main reasons.” And suddenly that was the last result from my blood tests he wanted to talk about.

So while no hope on the anemia front, I could get synthoid once the antibody tests come back in two days. So here is hoping (I’m hoping for auto-immune diseases, how sad is that?). But as for THAT ER, I rate it a 2 out of 10. For common injuries that visably bleed, it is okay. For me and others with rare diseases, the doctors and staff do not accomodate the disease or monitor them in any way (basic medicine) - which means you are in the Emergency Room of the Hospital, monitoring and trying to get help dealing with the same issues you deal with at home, WHILE you wait for them to figure out the BIG issue that brought you in that day. That ER and staff endangered my health, did not monitor any of the three things which were the highest risk to autonomic failure and then sort of blamed me with the ‘it could be conversion, it could be anxiety, the mind has a powerful affect on the body.' Gee, and so does OXYGEN, the kind that I can’t convert properly, the kind that I have lower blood cells to carry and they carry it poorly.

Does the ER thinking I HAVE MS now mean I can actually use the MS society clinic, unlike before when I was told “Money raised for MS is for patients with diagnosed MS only.”?

My specialist referral: blamed for my own death. Will ANYONE be 'responsible?'

The week before last, I tried to get a referral to get IVIG, which is for auto-immune diseases, and used in my case because it can pass the blood/brain barrier, and kill my OWN auto-immune system that is (believed) to be attacking and destroying parts of my brain.

The person who owned the clinic, who I explained the whole disease to, and who said he liked a “Challenge” and took me on as a patient responded that he could not get me a specialists referral ‘until he has read the case file’. I pointed out that it had already been two months and when WOULD he read the case file? He said he didn’t know but that (insert chilling music) “maybe this isn’t the place for you.” (oh how many times have I heard GP’s say that. He went on to explain that I need a GP who would take responsibility of my case (which we pointed out, that after a full explanation he DID – no, no, he said, he merely ‘transferred my documentation’ instead of taking responsibility of me as a patient).
LAST week, I needed a refill and used another walk-in where there was no patients, it being a beautiful day and a Sunday. The doctor there, Dr. M. was cheerful, and so, with no patients waiting I asked him, “How DO I get IVIG?” After telling him a bit about it. He said that I ask him and he gives me a referral, and he got out a sheet and made me a referral to a hematologist; I told the GP that I also had progressive Anemia and would need to see the hematologist for that also.

Linda and I virtually danced as we celebrated getting finally ONE of the many, many specialists we wanted, and we even got the one we asked for, Dr. H. (who we heard was very good). I however did not post the info on the blog but told a couple people by email. Just before leaving on Tuesday, we were called by the clinic which said, “The doctor needs more information regarding your referral.”

We came directly from up island, from vacation, and on Friday afternoon waited in the same office. I was confused. Linda said, “They wouldn’t call us in if there wasn’t a problem.”

We were brought into the room and soon one of the most angry doctors (a different doctor than last week) I had seen came in. I knew him as I had asked him to BE my GP. I did that when I saw him do a stick test for a UTI, and then send off the rest of urine for testing (what, actual science in medicine?) instead of the standard practice in Victoria of giving a prescription without a test. He said no, it wasn’t his thing, he didn’t want that and I was a complicated case. (Complicated case, I was to hear a lot of that, I heard a lot from my supposed GP when I was told I wasn’t his patient, because I need ANOTHER GP, due to my ‘complicated case’).

On this day I was meek and mild as Linda can testify, I did not raise my voice, use sarcasm or even question the doctor, I just wanted my IVIG! I wrote up this account immediately after coming home while we were both either crying or trying not to cry and Linda was wandering from room to room.

Enter Doctor in strong South Afrikaner accent : What is this about anyway? This case is too complex! This is a walk in clinic!

Elizabeth: I have a referral to get IVIG treatment and I wanted to know how to get it; Dr. M said a hematologist would administer it.

D: Peers at the letter, “Blah blah, MSA better served by a neurologist….” No, no, he won’t see you!

E: Taking out the reports on Progressive Anemia over now almost two years, “Yes, but we were also seeing him for…..”

D: (With force) He is NOT going to see you under ANY condition!

(pause) Linda and I look at each other.

D: This needs to be administer by a neurologist I guess, why don’t you go back to this Dr. A.-P.?

E: She recused herself.

D: Different Neurologists will have different opinions, so why isn’t this neurologist doing it, because you wanted something else?

E: No, she, Dr. M, ordered it done. The doctor who ordered it was the mentor of Dr..P and the case was referred upwards to her.

D: Well, just because He was a mentor means nothing, so you aren’t seeing any neurologists?

Linda: We are seeing Dr. PT…

D: (cuts her off and stares at me, speaking aggressively) “Well if you going to go shopping around for opinions, this is a walk in, you need a GP to handle this (Again, I think I am the only female in a wheelchair in the area to USE this clinic and I had the previous year asked him to BE my GP), this is complicated and someone needs to take responsibility. And here you are seeing all these different Neurologists. (this was said as if I was trying to commit a crime)

E: No, I am only seeing Dr. PT because he is a seizure specialist. All he does is seizures.

D: But he is a neurologist. Why can’t HE do the IVIG?

E: Because he said he will ONLY do seizures, and has sent me for EEG’s, only seizures.

D: Peers at form from Vancouver Hospital, “So who is this Dr. Sl? What did he say.” (the letter was CC to the movement disorder and the Genetics clinic)

L: “After the test he wrote to say we weren’t within his ‘parameters’ and so he wouldn’t be seeing us.”

E: Was he movement or DNA

L: DNA I think.

D: Well you need someone to assess you from the beginning.

E: (stares in horror…..’from the beginning?’)

D: Well you should have a family doctor. Who is this Dr. Jimmy

L: When earlier, no GP would take Elizabeth due to her complicated case, he was the doctor at Cool Aid who took her.

D: So why doesn’t HE do it.

L: He decided the case was too complicated.

D: (Looking at me) So who is your GP now, there is no point putting this on walk-ins, you need to find a real GP.

E: I have TRIED to get a family doctor, and have one, but it turned out that was a walk in clinic as well.

D: Well you need to find one, this is too complex. (Pause) You need to go back to back to Dr. A-P! (Slight pause) “If you try to argue in the slightest, I will not send off this referral at all!”

E: thinks of the Internist, who I waited 40 minutes after the blood work to be told, “You are fine, I can’t help you.” I was ushered out. I asked the administrator, “Um, I came down here, can I at least ask him a question?”

Adminstrator harshly: You have been told the findings, HE is a very busy man. (I was later diagnosed with hypo-thyroidism from the same test results).

E thinks of being at the counter to see Dr. A.-P. when the administrator says, “No, you can’t see T., you are BANNED from seeing him.” (he diagnosed me with MSA, she said I had nothing, it caused some office tension).

E: I’m not seeing him, yet.

Administrator: Well, your doctor needs to write a letter requesting a referral to see him, then I can respond! (???)

E: (having nightmares of the 18 months to see a neurologist, get referred to BACK up to Dr. M. who ordered the IVIG and would go, “I gave you the treatment protocol, why are you here?”)

E: (LONG PAUSE in office) I did go back to see Dr A-P after that letter.

D: And…

E: Dr. A-P does not want to give this treatment.

D: You are certain.

E: Yes, she does not want to give this treatment. She did offer the tilt table, but I specifically asked if that would lead to treatment and she said no. She made that quite clear. Linda can confirm that.

D: Well, you go HERE and you go THERE, and I don’t think you are going to find ANY treatment or anyone who will treat you or take responsibility for IVIG in this town.

I feel as if I have just been hit by a car. Is this town that small, that no one can do IVIG treatment, or that the system only goes in circles.

Dr. continues: “No one in this city will take responsibility for IVIG, you will need to move to VANCOUVER if YOU want to get IVIG.”

(slight pause)

E: “To get IVIG, I would go to Vancouver.”

D: “You would?”

E: “Yes. For IVIG.”

D: “Well, I’ll make this referral but, I don’t hope much……..(looking at paper) there are too many neurologist involved.”

D Takes the letter, tells the receptionists to send our originals we obtained by the freedom of information act from the Vancouver Hospital Clinic and to give them to the specialist. When he is gone as the administrator makes the copies, I ask for the originals back. “No problem” and we have them back. Never take originals into a doctors office, I remind myself.

A little later we talk:

Linda’s statement about the visit:

He took away all hope.
He took away all hope that we will get treatment in this city.

E says to L: He blamed me entirely!

L: Yes he did.

E: What did I do? Why blame me? Why get angry at me?

L: You don’t have a GP.

E: I tried, I have been refused now, what 28, 29 times, I even asked him!

L: He blamed you, it wasn’t fair, it makes everything uphill, it is acted as if it is all your fault.


Currently we don’t know if we got the Neurologist referral, or if like the Rhumatologist referral, we get the referral only to be accessed for arthritis, as the specialist only does arthritis. We don’t know if anyone in this city will take responsibility for treatment which is authorized to be done anywhere in this province.

I cannot go to the US, the treatment costs $18,000 (according to Dr. A-P). Dr. M. who authorized the treatment for six months as a baseline then continue with that or switch to a different drug depending on the results won’t sign a paper saying that it is impossible to get this treatment in Canada. Nor will she administer it. Nor would the neurologist she gave it to administer it. Or the one who treats seizures (but hasn’t seen me since……uh….dunno, a LONG TIME). Nor will any GP. No one will take responsibility for something that Dr. M has ALREADY taken responsibility for.

I now believe, that I will not be able to get a GP, have the strength to interview those GP’s to find one, have them review the case. Get an neurologist, a hematologist, a respirologist, a gastrointerologist (sic) and a few more. Have the tilt table test done to make a base line of autonomic failure. Then have the IVIG set up. It COULD be done in a week or two. But for the time to see a nuerologist, it is more likely if EVERYTHING went well, it would take 18 to 24 months. At the fastest, maybe five to six months for the neurologist instead of nine to eleven, one month (a miracle) for the tilt table, then another month for setting up the IVIG. It would be seven to eight months at a miracle. Or if I get hit by a car WITH my medical chart on me, maybe they would treat me at the hospital. However, they labelled the anemia and acute and needed immediate treatment and didn’t treat that!

So no, I don’t think I will live to see the treatment which may extend my quality of life. Nor, without the specialist, will I have palliative or even adequate pain medication. As Cheryl said, if they treated the thyroid, the anemia, and the auto-immune disease, then it isn’t so complicated anymore.

He took away all hope....that I can live, or live longer. Welcome back to Victoria.

Idyll Parksville Day: Cathedral Grove, Butterfly world and ...foreplay!

Here is a mini-preview blog of our day, the absolute minimum limit of pictures…so yeah, about 12 or so.

With another day of a heat wave in Parksville, we decided to head over to Cathedral Grove, a stand of original growth forest which had wheelchair accessible trails (of a sort). The sun was directly above but below the 200 high feet tree were was a lush loam of ferns and moss.

The Tallest tree in Cathedral grove is 76 meters tall which is over 220 feet. (See me way down the end there!) This first growth area has ferns, nurture logs (where small trees grow from a fallen tree), lichen, moss and all the things I love about rainforests.

I never believed I would see these trees or undergrowth again as I had gone there with Linda before we went to Wales, a memory trip. Thanks to Linda coming here to save us from the noise of demolition I have this wonderful experience again. I hope I can bring Cheryl (and any other who might want to come) here.

With the fresh flowers out the bumblebees were busy, and giving hums sounding a bit like ecstasy as they burrowed into the flowers and the nectar. Maybe that was just where my mind was drifting.

On the way back we went to Butterfly world in Coombs.
Note to self, places that have rare butterflies, orchids and such are NOT cool and cold. Still, I love butterflies and I kept wheeling here and there as Linda kept saying, “Have you seen this one? Have you seen the orange one?”(can you spot it feeding?)
It had an orchid and a water garden but our favourite section was the butterflies (with the turtles in the ponds having sex really, really slowly). The MOST elusive was the 'red one' (we love them technical names: "You see that red one with blue!") as it flew everywhere but would not stop to sip nectar or go to the feeding dishes, it just seemed to love dancing around our heads. But by sitting by the resting shade, I managed to get a snap of it when it stopped to rest.
There were other gardens, including this water garden which would have been great on a day not quite as blistering. The orchid garden produced lots of pictures but that will come in the full blog.

We also stopped to take a pictures of the famous shop with a well mowed lawn on the roof. It is well mowed because the mowers are goats, who stand and chew on the grass (picture in the full blog).

At home I had my afternoon nap and then we um, didn’t watch TV but explored the excitement a tub for two with a massage bar of soap can produce and how extensive exactly WAS my neuropathy? We were added with a nice Rose’ Champagne and thanks to midnight, I can say that we spent TWO DAYS in foreplay (HA!). Can you tell I might still be a bit drunk, and um….very, very relaxed (I can hear uptight religious types spontaneously combusting right now! But as was said about that ‘rest’ on the seventh day: And it was GOOD)? I will pounded by Linda for this in the morning...that might be fun too! Oh no, here she comes!

Too much noise, getting linda food, doing some art!

I regret to say that we have to leave our place for a while and head up island. This is because the people who own the perfectly fine houses across the street (including very pretty gardens) have decided that the time it right to knock them down in order to put up a sign and sell imaginary houses they will build there instead. They believe these new houses will be FAR superior (there will at least be a lot more of them and cost $350,000+). Not one of them will be accessible. Indeed, this company, which has won MANY awards has not made ONE accessible house for sale, or apartment building, as to date. I was told by the co-owner that of the 47 apartment buildings they manage there are TWO apartments that are wheelchair accessible and if they become available before they spend a year building these new houses, then I can move in there. I will not hold my breath.

Needless to say, when you combine chainsaws, earth movers, and demolition heavy equipment machinery about 30 feet away, it makes for quite a noise….a noise that goes on for only 9 hours or so. The down side is that I have been quite ill since…um…well there hasn’t been a day since Friday where we didn’t think of taking me to the hospital. One of those days involved being on the toilet for 7 hours for intestinal problems. Sadly one of those problems included that I was no longer able to produce lubricant in my intestines – can we all say “OWWWWW!” And then I was carried to bed. So peace and quiet are important and we are going up the island to a place by the sea where it is quiet. We have a very nice room because….the room which is for government workers is not accessible, though it may have a wheelchair roll in shower and such, the completely built for wheelchairs room has stairs leading to it (so disabled workers for the government..at all?). Welcome to Canada. And to the planning of such hotels as they build a room, advertise how they have a “WHEELCHAIR ACCESSIBLE” room and then when asked if I can GET to it go, “Um……well…..if you go that way, then….no, that won’t work….but…er..how about I upgrade you to something else.”

Linda is excited to go because she get to eat new food. There is a farmers market we may stop at along the way. That’s pretty much all it takes to get Linda excited – new place, new food. Yup she is a six year old at heart, just don’t tell anyone I told you.

We are almost packed so I have to go. The one thing I did manage to do over the last few days is read a LOT of manga (remember the 7 hours, that was just ONE of the last 5 bad days, and this one looks to be interesting too!). So I will do some reviews when I get back. Have no fear, I will report from our new location with pictures and all as I think they have Wireless. But I have wanted to do some more reviews anyway since I did not finish all the ones I wanted to review last time. Anyway, just in case some person accidentally pushes THIS BUTTON and goes to my wishlist: and then buys copious amounts of manga (or singles!) I will be very grateful since while some people do not see them as a medical necessity, when you are on the toilet for seven hours in just one day when you are only awake 11, or when you can only stare at the ceiling with pain, I tend to think of them as a form of alternative pain killers (they distract when life gets a bit too much to be endured). Also there is Mafia Chic for Linda.

Some of the manga is VERY historical and (if you get it now before like tomorrow) 36% off, like Ludwig II, which is about the relationship of him and his doctor as the kingdom moved on into democracy while he retreated into Wagnerian Castles and fantasy. And then yes, some is about gleeful youthful looking boys bouncing happily in the arms of grumpy novelists. Or books called ‘You will fall in Love’ about love in Jyudo (Japanese Archery…..they did say style and focus was everything!).

I am slightly anxious about going as I have by now so MANY machines to keep parts of me alive or not rotting that any movement from home base is slightly anxiety producing (plus many recent bad days). Plus last night was VERY bad for about 3 hours making us leave late today. But I am ready to go now. See we plan to have a DATE tonight. So off we are, two companions, goth sweet loli’d up and ready to see the world!
Linda has already said she has ‘plans’ when she went around yesterday demanding to know ‘where’s the dolphin!’ and I told her that if there was a vibrator thief in this house look to her own drawer. But no she ransacked the desk and then of course DID find them in her drawer. I just wonder if we have enough batteries? She has also said something about ART, and how she needs to do some drawings for postarity. I suggested that if we needed these as ART, why not do them outside? She said no, these one were best for inside the room, or perhaps the bubble bath.

I’ll tell you ALL about the date…well maybe not ALL. Later!